Sunday, January 31, 2010

My Silence

August 13, 2009

Subject: my silence

My dad wrote an email several days ago letting people know that Aria had been taken to the ER. He mentioned how busy we'd been in recent weeks with our Georgia trip as well as beginning a large remodeling project to 'Old Henry', our beloved farmhouse. I couldn't help but wonder if he mentioned these things as a way of offering explanation about my silence for the past 2 months.

I'll tell you very sincerely that the abrupt cessation of my emails was deliberate. I'll also add that it wasn't intended to keep you uninformed, wondering. That has been an unfortunate consequence and one that I didn't fully consider when I decided to stop writing. I knew I would resume when I was ready but I didn't take into account that even snippets of information about Aria might be helpful. Perhaps some of you wondered but were afraid to ask. This, too, is a strange and unfortunate consequence of my writing, which represents one of the reasons why I needed some time to pause and reflect about what I was doing.

The truth is, I was starting feel like Eeyore from Winnie the Pooh, always moaning, always negative, always ho-hum about every little thing. I was feeling stuck and I couldn't figure out how to get unstuck. I found myself writing about how hard it all is even now and yet never felt like I was able to fully capture it for you. There's this desire, almost need to explain it to you in detail and I couldn't figure out what was motivating that. I'm not sure I fully understand it yet but as I was making the bed this morning something dawned on me that I hadn't considered before. It often feels like I'm in this parallel world to yours and sometimes it's as if you are floating farther and farther away orbiting the great universe of normal and here I remain in this small and complicated world called Cancer. Sometimes it's as if I'm standing on the edge waving at you, shouting, "I'm Here! I'm Here! I'm STILL Here!" This is often followed by detailing life on this strange little sphere as a feeble attempt to keep you close, to keep you from misunderstanding what motivates and defines me now and to keep you from inadvertently judging me and what you don't understand. This I've come to realize in my silence is unfair. So often I'll tell my tale of woe and people will validate and comfort me. They are always so generous and I stand before them feeling incredulous. "How can they say to me, "Of course you feel that way Julia?" when I can't believe it myself. I realize now that it isn't you floating farther away leaving a wake of misunderstanding. It is I. To get me to this place took some time and some thought. Let me share it with you, if I may.

In my fictitious Eeyore state, I was feeling insecure that you were reading my emails thinking me completely pessimistic and unable to see the bright side; Aria is doing so well. I recognize that I was projecting these thoughts but I was stuck doing so and couldn't figure out how to stop. I couldn't seem to shake the heaviness of it all and for some reason I had convinced myself that it needed to be lighter. Certainly we have reached a point in treatment where we can be lighter. Can't we? I have since come to realize and accept that, no, we are still in treatment and life for us is heavy. Even though Aria is great, life is still hard and it runs the spectrum of emotion.

Layered on top of this growing insecurity making me feel like I needed to shut down and turn away from others for reasons of self-preservation, were 2 distinct incidents that occurred roughly around the time I contemplated taking a break to gain some much needed perspective. The first was that I read a biography about Joseph Campbell, which was excellent. In it were many excerpts from his private journals of his youth. One of the things he wrote that shot out at me like an arrow was that he viewed his journal writing as the ultimate form of exhibitionism. He meant this at that time in his life as something not so nice. Suddenly, I found myself taking that very personally coupling it with my already over-emphasized bout of insecurity and doubt. I found myself thinking, "Julia, like you have ANYTHING to say! Just Shut Up! Quit your moaning! No one wants to hear it anyway!"

Shortly after that a good friend came to visit. I shared with her some of my doubts and she said something to me that was the final straw. She may be reading this now and it is imperative that I say, her comment, although it shut me down temporarily, was a wonderful bit of truth that helped me open a door barred with nailed slats of my own fear. She said to me, "Yeah, your emails are like one-way therapy." At the time, I groaned in that truth imagining my emails being opened like some horrible monster spewing green gooey contents of God-only-knows-what! I kept thinking, "Oh my god, you poor things! Here I am exposing myself from all angles and all you want to do is close your eyes and gently hand me a robe! Furthermore," I continued, "no one wants to hear you rambling on and on about how this is making YOU feel. This is about ARIA, not you, so just stick to the facts and keep all that other stuff to yourself!" Right then and there I turned off my mind to writing.

It has been a wonderful pause. I don't know that my mind has been silent per se but it has respected my need to go deeper. It is interesting to observe that during this time, I also haven't been able to remember any of my dreams. Normally, I have a vivid dream state but I told a friend that it feels as if I've closed the portal to that particular aspect of myself for the time being.

Let me tell you that it seems clear to me that virtually everyone I have met on a similar journey knows this insecurity and doubt well. It's not that it is rational nor is it even well founded so don't try to understand it from those perspectives. Rather it comes from living mired in moments that anyone in their right mind under other circumstances would try to run away from. The thing is, we can't. We have to be present and sit in the middle of this shit pile called cancer day in and day out. Yeah, there are rays of sunshine that come around. There are butterflies that visit and songs of birds swirling around the stench of worry that is now our life but those feel so small a lot of the time. Those feel like moments of joy, pleasure and optimism that we reach for and hold onto for dear life, but they don't last. They'll come back. That is the hope. They do. That is the miracle. Still, here we sit in this wretched foulness.

Do I continue to tell you about it? Because the truth is that if this experience was only about Aria, it would easy. The pile would be hardly noticeable by now and the scent would have strong wafts of perfume floating by. But it isn't just about Aria. That's the problem. That's what makes it so big. Do I go on? Do you really want to hear about it? I know I'm so sick of dealing with it and facing it that surely you must be too! This is the start of the insecurity. I continue on because I don't know what else to do. I explain. I illustrate. I try to draw you into our world for my own sense of comfort. But there's nothing you can do and there's nothing you can say. I just have to sit and be and man that stinks! You know it and so do I, so what happens is people say less and less. Again, what is there to say? The sad consequence to the silence is more insecurity epitomized by the assumption that people are tired of hearing about it. Maybe some are, but most aren't. People want to know even though they don't know what to say or say all the wrong things thinking they have to say something.

The insecurity increases and what happens next is a sort of natural retreat. So many of us have to be withdrawn from normal activities anyway that it becomes easy to remain that way even when it isn't entirely necessary. This reality welcomes another form of insecurity called self-consciousness. The bottom line is that being home is familiar and it's safe. But what happens after this separation from others is a sort of closure that isn't helpful at all and yet also seems like such a natural progression. In one's insecurity, doubt and refrain, there's a feeling that others just don't understand anymore. "They just don't get it!" I hear countless times. What they're trying to say is that the crisis is over but the rubble remains and who wants to hear about that day in and day out? We've convinced ourselves that the rubble is rubbish, not worthy of attention, fatiguing and annoying to others. What's worse is we often see the rubble of others and theirs is a mightier mess, so what do we have to complain about? It could, after all, be so much worse. This attitude suggests that it is better to fortify and shut others out to minimize the reminders of just how removed from everyday 'normal' life we really are. This is an easy place to get to and it is an easy place to stay. It seemed like a sort of slow death to me and I didn't want to be caught in its grasp.

I took some time to be quiet. I fortified myself not to keep others out but to figure out how to open up wider than ever before. It seems to me that somewhere down the pike, we have oversimplified the idea that negative is bad and positive is good. This, my friends, we all know to be folly. We know it doesn't work this way. But it is a pervasive attitude; one with a horribly hard shell. It takes a great deal of strength to crack this notion and get to the balance resting inside. This is what I've done for the past 2 months. It has been so difficult to get over the hump of thinking that I'm droning on and on unable to be inspiring, as if I need to be that let alone thinking that inspiration means being only positive.

We're sort of led to believe that, you know. We've been taught to suffer in silence, put on that happy face, keep a stiff upper lip, never let your guard down, never let your kids see you cry, show them how to be brave, how to grin and bear it. Shall I go on? I'm sure you can find several other examples and doesn't it strike you as odd that when people do this and we know they have every reason to be sorrowful that suddenly we find ourselves suspicious wondering if they are in denial of some kind. It is my belief that what we're craving is to see that people are real and genuine.

I understand that many people are private about their feelings and there's nothing wrong with that. The problem that arises, as I see it, is people confusing being private with being closed off. In other words being so private with one's thoughts and emotions that they can't or won't let anyone else in. This is the voice of fear. People fear being vulnerable and appearing weak so they shut themselves off and shut others out proclaiming, "they just don't get it." This is what gets people stuck.

The reality is, that you don't know and understand my experience as I do but it doesn't mean that you can't. I see it as my responsibility and my privilege to share it with you in as much gruesome and beautiful detail as possible. I don't want to shut you out because I've convinced myself that you don't understand. I want you to understand. I want you to see. I want you to share this with me. It helps ease the load. It strengthens me. It keeps me from being lonely. It makes me feel alive. If it has some kind of other effect like it helps give rise to your own voice and your own story, well then, I'm delighted but the main reason for my exhibitionistic one-way therapy is purely selfish!

So here I am completely exposed once again but I am fortified. I am stronger than ever. I am in the radiance of Aria so it is no wonder that I feel as if I possess super powers of a sort. I have to write about this experience. The compulsion to do so is beyond me so I want to welcome you once again to our experience as we head toward the finish line. I want you to know that your presence has meant the world to me. I want you to know that whether you understand my experience or me is irrelevant compared to the importance of you just being with me. If I can shed some light on what it means to be in the midst of cancer, may it be in the glow of Aria. ~j

Aria Came Home!!!

Those Lazy Days of Summer!!!

August 1, 2009
Subject: Aria came home!

For the first time ever, Aria went to the ER with a fever and didn't have to be admitted! They accessed her port and drew some labs, which revealed a spike in her white blood cell count, which is nothing more than a healthy indication that her body is fighting an infection. This also meant a decent ANC so no need for an admit, YET. That's the key word folks. In the ER they gave her a broad spectrum IV antibiotic and talked to Dr. Trobaugh, who was on call last night. It is Dr. Trobaugh's belief that in a matter of days, her counts may tank. So, she stopped her chemo for the time being in preparation. She firmly believes that this is a result of the swimmer's ear bacterial infection that Aria is currently trying to fight off. If she continues with the chemo, Aria will definitely become more immuno-suppressed with tanking counts. By stopping the chemo for a few days we may be able to avoid that altogether, but it is a wait and see game. When Aria came home (nearly 4 hours later), her fever was gone and she slept through the night staying nice and cool. Naturally we were checking her constantly. If she should spike a fever again, then we'll take her back to the ER and she'll more than likely be admitted.

I think we're in a new phase. I've heard of people going to the ER for fevers and not having to be admitted and I've always wondered what that would be like. Now I’ve had a taste of it and I have to admit it is nice! That may strike you as being a little odd. Of course, it is wonderful having Aria at home versus in the hospital, but let me tell you, there's a great sense of comfort at the hospital. Those nurses and doctors know how to take care of my Aria and they do it in a way that is so gentle, efficient and caring. It is also very nice.

Being at home, we're on a bed of pins and needles. "Is she going to spike a fever? When? Does she look warm? Aria, are you feeling ok? We better not go anywhere or do anything just in case." It is a halting kind of existence. When we're in the hospital, at least we know we aren't going anywhere. At least we know what we're dealing with. At home, there is tremendous comfort but there is also a sea of unknown surrounding us. Do I let her go outside and play? Do I let her go swimming? Should I take her out in public? Should I just sit with her on the couch all day and watch her waiting for something to happen? Do I treat her as if nothing has happened since she doesn't have a fever right now and everything seems ok, knowing full well that there may be something brewing again? This is an emotional tug of war that I don't enjoy at all.

This morning Aria was whimpering at the top of the stairs complaining that her tummy hurt and that she felt 'throw-uppy'. You can imagine the tale-spin this created. So naturally, I put her on our bed and she felt warm. I prepared to take her temperature, which is normal and I gave her the morning medicines. It is a matter of monitoring her. It is a matter of not being able to let my guard down. It is a matter of spending a very hot day in a weird sort of red alert.

It is worth mentioning here that this fever came as a complete shock yesterday. I told you already that she had a great day and there was never an indication that something was brewing and that a fever was about to happen followed by another ER visit. I'm so thankful my Goddesses were and still are here to bear witness to the fact that things really can and do change in a matter of minutes and this, my friends, is what is so absolutely unsettling. I'll never get used to it. I try. I tell myself that we know this routine. I try to convince myself that everything is fine. I try to find a light place that rings with a sort of sing-songy "here we go again!" But the truth of the matter is that it is always an emergency. It is always frighteningly dreadful. I'm always left with this horrid feeling as if I've been standing still and suddenly shoved from behind with the wind knocked out me while I try to pick myself up off the ground.

My dear Goddesses stood back watching us spring into action, preparing over-night bags, talking to the kids, getting Aria dressed, calling the clinic with a sort of stunned fascination. There was nothing they could do but watch and process their own reactions to the situation. It was almost impossible for them to understand that literally one minute Aria was swimming playfully in the pool and then the next lying on the couch with a temperature. There was no indication of anything happening in between those moments. This is a glaring reminder of the illusion of control. There is no preparation for this kind of thing sometimes and that is a leathery lesson to learn.

Back in the moment, this moment and this now, Aria is feeling better. She is enjoying her morning cartoons and is cheerful. We shall see what the day brings. Indeed there is a great deal of strength from hearing Ewan McGregor’s "come what may" crooning in my ear once again. It will be what it is and I will be equal to it. This is the way of the warrior. This is the way of Aria and it is my privilege and honor to be by her side. ~j

A summer ER trip

July 31, 2009
Subject: A summer ER trip!
I know you haven't heard from me in a long time. I'm well aware of it and I will write about what we've been up to. But for now, let me tell you that Aria is off to the ER. Yesterday I took her to the ER for what I was pretty sure was swimmer's ear. Sure enough, she has an external otitis in her right ear for which she was prescribed medicated ear drops. She didn't have a fever so no labs needed to be drawn. We left the ER, however, with the urgent reminder that things can change very quickly for oncology patients with any kind of infection. The ER doctor mentioned that the bacteria responsible for swimmer's ear is particularly nasty so to watch her carefully. What would ordinarily feel like a normal kind of summer kid thing felt heavy. By yesterday afternoon she was feeling better and this morning she was great. As a matter of fact, she was terrific all day long.

Suddenly, about 20 minutes ago she came into the living room and laid down on the couch with a blanket over her. She said she just felt tired. Jeannie Goddess, who is visiting right now went to her and said that her forehead felt hot so she took her temperature (100.5). This is an ER visit. I waited a few minutes and began to gather some things and took her temp again (100.9). I started hurrying around a little more and packed all her things, ran out and told Doc, who quickly came in to shower and get ready. I called the clinic and let them know we were coming. About 10 minutes had passed and for fun I took her temp again because she seemed so well (101.3).

So off they went. Yesterday's ER visit was the first time ever we were able to leave the ER and come home. I don't think this will be the case for tonight but you never know!! Her ANC this past Tuesday was 1012, which is pretty decent but with a bacterial infection in her ear already, things could be rapidly changing. Please keep her in the light. ~j