Tuesday, May 26, 2009

Aria the Warrior!

I wrote this email to give friends and family an update of Aria’s second spinal tap procedure since leaving the hospital and becoming out-patients. Aria was just beginning to show significant signs of the steroids and we were beginning to understand the routine and life of the out-patient world. Every aspect of what we experienced felt so intense that lighter moments were equally intense in their healing restorative power. For a long time I remember feeling like I was swinging from one side of intensity to the other all the while wanting to find some middle ground. That would escape me for some time.

Fri, 1 Feb 2008
Quick Aria Update

Fridays are outpatient clinic days. I was relieved that we were going to clinic today. I was worried about how Aria had been feeling. The diarrhea was especially worrisome to me and I was mentally prepared to hear that she would need to be admitted. I simply didn’t know what to expect so I tried to imagine the worst and prepare for that. This produces a lot of unnecessary anxiety I’m afraid, but it is something I do anyway.

Doc said something to me the other day that was really helpful. He reminded me that I have no experience taking care of really sick patients; people who are in the hospital, truly fighting for their lives. This, he reminded me, is not Aria. Yes, she is dealing with some significant side effects but right now, at least, they are manageable. This realization was such a relief.

Aria woke up this morning miserable. Her tummy was churning and she was hungry. What's worse is that she was reminded that she wouldn't be able to eat. Obviously, this made her even hungrier. We continually told her that her (pathetic) choices included water, apple juice and jell-o. "Yuck, yuck yuck!" was her response. Doc and I felt great compassion for her all day. It was hard. Poor thing. She was pale, hungry, grumpy, probably a little scared and fed up. So, off we went to the outpatient clinic!

We arrived promptly at 11am and had her vitals taken; weight, height, pulse, blood pressure and so forth. All was good. Her blood pressure was a little low but her heart rate was just fine. She stayed in Doc's arms the entire time. "Oh, my tummy says it is soooooooo hungry!" was the whimpered cry she repeated over and over again. Her port was accessed so labs could be drawn and then we waited. The waiting area/playroom was packed with parents, patients and siblings. There was a music therapy professional there so drums were played, a guitar and so forth. It was festive and fun. Aria was in no mood for any of it. Doc was sitting in a glider rocking chair, while Aria was sitting on his lap facing him. Her knees were bent on his lap as well as her head, which she basically buried in his chest. There she remained and even managed to nap a little until her procedure around 130 pm. Our oncologist spent some time with us going over the lab results, which showed that all of her counts continue to decrease but there’s nothing alarming at this point. Still no need for a blood transfusion yet and she spent time trying to figure out why Aria was having issues with diarrhea and stomach upset that wasn't like nausea.

We had a great conversation and I felt completely reassured. In her eyes, Aria was doing well. She is responding very well to treatment; her first bone marrow biopsy revealed 94% leukemia cells and after a week's worth of treatment her second bone marrow biopsy showed a drop in leukemia cells to 18%. Clearly, the diarrhea is not good and could be a little infection she's dealing with or the antibiotics but overall, she seemed pleased with how things were going. Aria went to the procedure room with Doc while Reo, Rianna and I went to the waiting/play area again.

About an hour or so later, Doc came in letting us know that Aria did great but she was FAMISHED! It was almost 3pm and she hadn't eaten anything since dinner time the day before! So she chowed on all the food we brought. She was perky and so happy to finally be able to eat. It was so nice to see her cheerful. Her stomach was still churning and upset but things were good. She also made a special request for an ice cream cone at McDonald's.

We had an x-ray of her abdomen done and we were on our way. We arrived home around 5pm. Aria had a nice dinner and was ok this evening. Her tummy was upset but she didn't have any diarrhea. We may be in for a long night so keep your fingers crossed that she sleeps well. She had good spirits for the most part. It really is up and down. One minute she's telling stories and laughing a little, the next minute she has her hands to her mouth pouting and about to cry.

I did have a moment to ask her something though. While we were in the hospital, the kids have posters made that are placed on their doors so people walking by can glance at them and learn a little something about them. I had made a very glittery one for Aria and on it I wrote in the "Special Information about Me section"
"I have the soul of a fairy but the spirit of a Warrior!"

So tonight I asked her if she knew what 'to be a warrior' meant. She shook her head "no."
I told her, "A warrior is someone who is smart and brave and willing to fight..."
She cut me off and exclaimed, "I'm not afraid of Dragons! I'm not afraid of dragons OR monsters! (pause...inside I'm cracking up!) I'm not afraid of ANYTHING!"
"Aria that is why you are a warrior!" I told her.
This is our warrior! ~j

This photograph was taken in September 2007 in Liberty Kansas while visiting family.

Aria's Tenderness

We had been home a little more than a week and settling into a new routine. Aria was clearly unwell and yet this was all a part of adjusting to dozens of new medications as well as healing. We were all somewhat sleep deprived and stressed and this was taking a toll. We were trying to keep life as simple as possible and so far things were working fairly well. My confidence was increasing with every day. My comfort dispensing medicine and cleaning syringes, which might not seem like a big deal to you but at time it was enormous for me. It was all new and so it was scary. It was something I didn’t want to do but had to and so that was hard and weird to reconcile. Still, I began to see that life was unfolding offering me incredible glimpses of something else, something more meaningful than I could have ever imagined. Moments like the one I describe in the email below happened in a flash and yet the moments surrounding and defining it were every bit as meaningful and I found myself drawn to taking in every minute detail of every moment of every day as if it would be something to venerate and celebrate someday. And so it has.

Subject: Aria’s tenderness
February 1, 2008

Aria has had a rough few days. She's had terrible diarrhea and cramping. We've called every day since it began Tuesday afternoon and the general consensus is that the antibiotic she received over the weekend is the culprit. She's been eating well and taking in plenty of fluids so we aren't too worried about dehydration and the like. Still, it has been REALLY hard watching this fragile (or what I project to be fragile) little person, bent over, moaning saying "ooowwwwwieee" for the better part of a day. Yet, through all of it Aria finds the spirit to be tender and considerate and completely self-less. This is what she did.

The other day, Wednesday January 30th, we had a BIG day. We had the hair-cutting party at a fancy salon. It was fun and I'm convinced Aria would have had a good time had she been feeling better. Balloons and treats were involved as well as a large audience just cheering for us. It was magical in many ways.

Allow me a wee digression. If you didn't know already, the state of Washington is in a state of emergency because of all the snow. We have been out of school this entire week, which has been PERFECT with me since Doc has gone back to work. In any case, the snow has been gorgeous and fabulous and intense in terms of getting anywhere. Driving has been really tough and our country roads get plowed by people with tractors and plows on their pick-ups, like us. They get plowed by the big heavy equipment but usually not for a few days after a snow and certainly not when you need to get around. So, Doc has, for days, been digging people out of ditches and snow banks. He's been plowing our driveway and the road to the barn as well as Tata's lane and the driveways of a few neighbors. He has been at this for hours every single day.

Wouldn't you know, after our hair appointment, I'm trying to get out of the parking lot and I slide into a snow bank and get stuck. I call Doc who has just arrived home early so he can begin plowing and I ask him to come back into town and dig me out. He has every reason to be angry and irritated but he isn't. He's calm, understanding and loving. The kids and I wait in the car for him to come. Aria is completely wiped out. Reo is amusing himself with stories and Rianna is sound asleep. I'm a little worried that Aria will need to use the potty and I'll have to quickly get everyone out of their car seats and head back into the salon. This didn't happen and despite trying to be open, I was so thankful!

Our hero arrived about 30 minutes later after receiving fair warning of the new looks we were all sporting. It was a mess! The innocent little snow bank that my front right tire was stuck in was really an ice bank, which Doc had to chip at and shovel through, breaking the handle of the shovel in doing so. So with the head of the shovel, there is my husband, my hero, banging away at this snow bank; something he's been doing for days for other people with nothing but a generous spirit. I know it was the LAST thing he wanted to be doing for us, but there he was. Finally, after a good 30 minutes and some pushing and rocking of the car, we were free!

By the time we got home, it was close to 5pm and our hair appointment had ended 2 hours ealier. Doc still had some major plowing to do with another snow storm headed our way. It was a daunting task to begin as the sun was setting. Still, he had his coveralls on and all his gear and for nearly 3 hours he plowed snow. The kids, meanwhile, were contentedly watching a movie. When Doc came in, he was angry. He was frustrated. I swear I could almost see steam rising from his body and of course I asked him, "What's wrong, Doc?" His reply, "Oh, I'm just mad at the world right now and really need a minute to get myself together!" You have to understand, I can count on one hand in a year's time the number of times Doc says he's angry let alone loses his temper. He's the most collected person I know. This was a big deal. I'm embarrassed to admit this but the completely juvenile place I went to can be summarized in my reaction which was, "Doc, (pause) are you mad at me?" The minute the words rolled off my tongue, I thought, "UGH!! Hello? Are you 12?" Still, I had to know if coming to dig me out was just the final straw and what's worse, I had to face with all humility that he may be disappointed in me and my carelessness. I took a deep breath and waited. Doc looked at me and said so reassuringly, "ooooh no baby, I'm not upset with you. no. no. no. I'm just having my moments too."

It was fast approaching our bed time ritual which has seen the addition of medications for Aria. She takes them exceptionally well now and has resigned herself to this daily reality. Doc and I embraced and exchanged wordless recognition and admiration of each other. It is the boost we give each other to face what we must. We went upstairs to get Reo, Aria and Rianna ready. Reo was in his room playing with his stuffed animals. Rianna was in my arms as I walked into Aria's room. Aria was sitting on her bed with Doc who was talking to her about her medication and discussing whether she wanted her meds in the bathroom or there sitting on her bed. Again, these little decisions that we allow her to make in this very big process, we believe, are very important. She decided to have her meds on her bed.

Doc looked at her and smiled. He was tense and tired and trying to put aside the weight of the world that was weighing so heavily in that moment when Aria said to him very clearly but gently, "Daddy, I want to give you something." Instantly, Doc sat straight up. "Oh yeah? what?" They stared at each other for a moment and she said, " A hug."

I'd never actually seen a person melt into another person's arms before. Doc had been disarmed by our 4 year old daughter and the weight he'd been carrying high in his shoulders was gone in a single breath. Aria wrapped her arms around him cuddling her face into his neck. He gently picked her up and brought her onto his lap as I watched in silent tears. I stood there in awe of the human spirit and more specifically Aria's spirit and her "gift". The gift of herself so pure so innocent so healing in time of great need. I'm quite convinced I've never witnessed this kind of unconditional giving and realized in that moment the profound lesson she had just given me. With that, I quietly left them in her room.

Aria getting ready to say goodbye to her beautiful braids!

Aria feeling completely sick to her stomach. Her hair was the least of her concerns.

Aria sporting her new look, which I might add is adorable! She liked her hair cut a great deal but just didn't feel well. Incidentally, the outfit she is wearing is something I made for her. She has another outfit similar to this one. She wore them to every single clinic visit we had for months and months.

Reo cutting my braid. Rianna found some gel tube to chew on!

After he cut it, he was a little shocked and although he wanted to the cut the other one he was nervous. I love how he's checking out this braid specimen.

What you can do to help...

This is an email that I wrote to address the overwhelming need “to help, to do something” that comes into play when tragedy strikes. People feel completely helpless and lost watching their loved ones navigate the waters of horror. I know my parents were a little stunned when I told them not to come out and to wait. They heard the news and were looking into flights to come ‘help’ almost immediately. I put the brakes on those plans for them. I couldn’t think of what ‘help’ I needed. I needed the nightmare the stop and wake up into my old reality, but this wasn’t going to happen so finding things for others to do to be helpful eluded me.

People often look for direction. They want to do something that they would be of some use. People tread lightly. They don’t want to intrude but they have an overwhelming urge to get involved. They simply don’t always know how. This was my perspective just 2 weeks after we received the news.

January 29, 2008
Subject: What you can do to help

You wouldn't believe the outpouring of people… even complete strangers. I have heard countless times, "If there's anything and I mean a.n.y.t.h.i.n.g you need, just let me know." The sincerity, the almost pleading tone to help is so humbling and I am so grateful. I know I have said this myself time and time again only never to be called upon.

I've been thinking about this a great deal because people genuinely do want to help. People are ready and able to help. Friends and family feel so helpless and want to contribute in some way, any way, something, anything to lighten the load. I sense this so completely. There's also this overwhelming respect for privacy. The desire not to intrude, the respect for our space and our need to hunker down with our kids as we figure this out inhibits people from taking action.
"Do I call and check on her?"
"Geez, I don't want to bug her."
"Julia's forthcoming, she'd call and let us know, wouldn't she?"
"Man, I feel like I just gotta do SOMETHING!"
I can hear it loud and clear!
My brother Mike wrote to me recently and told me about a friend who is in treatment for breast cancer. What Mike said was, "The one thing I learned about
cancer patients is that "Let me know if you need my help" doesn't work. You
have to actively BE HELPFUL, because they normally don't ask." I cannot tell you how this resonated with me. Thank you Mike for saying it.

I am at a complete loss for what my/our needs are right now. A complete loss. I'm full of contradictions that leave me feeling a little stuck. For instance, we will need a housekeeper at some point BUT right now doing some of the cleaning myself has been incredibly therapeutic. I caulked the bathroom tub after 9 years! I used a pair of sewing scissor to scrape out the old crud for heaven's sake! It felt so good to do. Do I really need someone, a friend, for instance, to come over every Wednesday to wash the floors? Perhaps, but it feels so wrong that I can't go there. Being available for Reo is another incredible offer. There will come days when someone will have to pick him up from school or drive him and I'm dreading it. I'm dreading that transition for him. It is one more new thing for him to accept and endure. He will because he must, but he's 6 years old. Granted these would be people he loves and adores but there's no getting around the reason for someone else having to get him. This is yet another reminder of how little control we have. It is a lot to ask someone to be on stand-by for the off-chance that they are needed. Plenty of people have offered and I have my list but it weighs heavy.

Food, everyone wants to bring food, which has been SO great!! Cooking for Doc and I is something I normally love and right now it is all I can do to keep the kids fed so having outside food has been great

The other offer we've received a lot is for someone to watch the kids while Doc and I go out and have some quality time together. This is so generous and so amazing and falls completely on deaf ears right now. I’m so sorry! I can't even imagine wanting to do that 6 months from now. Who knows maybe my attitude will change then? I know it’s important to keep the "us" part of our relationship but Doc and I are definitely our best "us" when we are with our children. This time in our lives is so intense and so all consuming and I have a strong sense that I will not regret a single moment of it 5 years from now when it seems like some kind of surreal dream. I could be completely wrong and forgive me if I'm sounding defensive but I feel so connected with Doc on so many levels right now that time alone with him out to dinner seems odd. I described it to a friend today as something like this. Suppose your kid is really sick and has been for some time and you're worried. It's basically all you can think about. You take your kid to the doctor and you know full well that he/she is in great hands. It's the doctor for heaven's sake! So you make ready to get your kid settled in with the doctor and you say, "ok hon, all is well, I'm heading out to grab a little me time..be back in a jiff." Would you really feel better? Would you really have quality time? Would you really be able to let go? Perhaps that isn’t the point. Perhaps the point is simply a tiny little break and change in scenery. Perhaps that would satisfy some. I’m not ready yet.

Nope, despite how tough it is, how grueling, how all consuming, we are sticking close to home, the kids and each other. Again, I recognize this offer in particular is so sincere and so genuine and coming from of place of pure consideration. I'm just letting everyone know where we are in the process. It also doesn't hurt to know that Doc and I are complete home-bodies. I can stay cooped up in this creaky old farmhouse for weeks and be perfectly A. OK!

Regarding the matter of calling me and checking in. PLEASE do! I've said this before but if ever you are inspired to call me, don't hesitate. If I can't talk, I won't. You are all being so tremendous to us. The emails, the wonderful letters and cards, the presents, the phone calls and so forth have already been so helpful. They all matter. The reminders that you're available is so great.

Remember that this process began only 2 weeks ago. 2 weeks ago and already it feels much longer. We have a long, long way to go so loads of opportunity await both you and me.

In the meantime, from the very bottom of our hearts, Thank-you! Like Mike said, "you must be actively helpful." For now, that means your presence, your availability, your listening ears and your wide open warm hearts!
Our love to each and every one of you!

It is fascinating for me to read this email now 16 months later when living with leukemia has become somewhat routine and normal. As a matter of fact, what makes me anxious now is thinking about what will happen when her treatment ends and her body will be left to its own devices! I’ve grown accustomed to the monthly examinations and constant follow-up. There is a great comfort knowing Aria is being monitored so closely. We have everything ‘under control’ and life has resumed to a familiar pace.

Still, when I think back to those early days, weeks and months with people asking for things to do, I find myself in a struggle. On the one hand I can see so clearly the benefit of having people come in and lighten the load by doing simple little chores like dusting, vacuuming, laundering, cooking and so forth. People want to do those things. They want to stop feeling helpless. They want to give me a break and ease the tension that consumes my mind and body. I understand this so fully.

But it’s what’s on the other hand that causes me to struggle. I don’t want to give up those things and I didn’t want to give them up then either. Yes, all those regular piddly household chores were a sort of added burden in those early days, but they were also the only measure of control I had at the time. So much of our lives felt completely out of control. Not in a spiraling chaotic kind of way, but in a way that shattered my sense of security, balance and order. At home I could control how dirty or clean my house was. I could have control over when the laundry got done. It gave me an enormous sense of accomplishment to wash and fold clothes, which was something I was desperate for because like so many people wanting to help in their helplessness, I, too, felt incredibly helpless.

Every day I watched Aria and worried and wondered. Every day for months I wondered ever so briefly if there was something I had done to cause this. Sometimes scrubbing the toilets helped me scrub away those thoughts and flush them to where they belonged. Sometimes vacuuming up dust and dirt helped clean my mind. Sometimes washing the dishes enabled me to cry and mix my tears with the water running down the drain. I didn’t want other people to take those things from me. I needed them. I needed to feel like I could do something, that I was doing something. I needed those activities to reminded me that I was still ‘normal.’ I was forced into a situation that was constantly reminding me of what I had to ‘let go’. Every time I let go, my heart broke, making me feel a little more vulnerable. Likewise, every time I could hang on to something, I felt empowered and as if a little of me was on the mend.

I know I frustrated many people whose offers for help I rejected. At the time I remember thinking that I simply didn’t have the capacity to assign tasks that would be ‘helpful.”
“So and so, could you polish the furniture?”
“You there, could you run to the grocery store?”
“ Hey, I could really use this or that.”

Some people are fashioned this way and know exactly how to delegate duties to satisfy other peoples’ needs to be useful and helpful, as well as take care of their own needs. In many circumstances, I think I’m a rather decent manager. Under these circumstances, however, I was shown that I am not. Crisis does not lend itself to steering a clear way.

People would hear my fatigue and my burn out and it made them uncomfortable. They wanted my suffering and my sorrow to end. They longed to give me a break; something, anything that would break up the monotony of my days. Some people relish having a break by having a massage or going to the Mall or getting lost in a bookstore. That is a rare treat for me and I have to be ‘in the mood.” Offers of this kind were of no interest to me and at the time I wasn’t able to explain why. I didn’t know! I simply felt, “thanks but no thanks.”

When we were adjusting to all of Aria’s new needs, the last thing I could consider was being away from her. The thought of taking some time and having a massage just made me want to wretch, for example. Going to the grocery store enabled me to have a little break and to wander around but I tell you, wandering was hard sometimes. Indeed it was a break, but it reminded me that I felt lost a lot of the time. The things I looked at in a store were so meaningless to me. Suddenly everything took on this label of ‘stuff’ and I began to loathe it. I would feel my heart race with this urgency to get home and be with the kids and Doc. This is what mattered to me. Suddenly not missing a single moment with them held more meaning than I can describe.

I suppose some of this urgency was intertwined with my anxiety over “what if something happened while I was gone?” This thought made it virtually impossible for me to let go. You may wonder, “is it a control issue?” ABSOLUTELY! But allow me to say with clarity and conviction that that must be ok and let me tell you why.

You see, I felt hurt knowing that I was disappointing people by being honest in refusing their help. They felt rejected, annoyed and at times judged me for my decisions. Crisis like this creates a situation that isn’t meant to add insult to injury by creating hurt feelings, but you can see how it happens. Tragedy strikes. Something happens and you are watching a beloved suffer. You have a need to help. You want to help. You offer help. Your help is rejected. Now you feel rejected and hurt and so project your feelings onto the one you wanted to help in the first place. Suddenly that person is controlling, closed off, and unable to let others in. Afterall, all you wanted to do was help! What could be so hard about that? How can they reject my help? How can they reject me?

Let me tell you that it isn’t as simple as you may think. Not only that, it isn’t about you at all! I would never have been able to explain this 16 months ago but with time I think I have a better understanding.

Back then, I felt like I had a grip on a lot of what we had to do. I felt upright. I was moving. I was making decisions. I was speaking in complete sentences. I was feeding and clothing the children. I was laughing and able to tell a few jokes. I seemed relatively ok and for the most part I was and that’s because I was in a survivor’s mode. My world was destroyed when Aria was diagnosed with cancer and more destruction was constantly being threatened by thoughts of her dying. All the things that I had to do and those things that eventually had to get done were so minor compared to the monumental thoughts of what was happening to Aria and how our lives were being redefined before our very eyes.

I knew the laundry would get done. The house would get cleaned. Food would somehow be in the fridge and get cooked up and served. None of those things really mattered to me and so devising a plan for others to do those things was simply beyond me. Interestingly, what happened as a result of other people feeling hurt by my lack of direction and openness left me feeling surprisingly inept. I had to face that I was not able to discern my needs and delegate them so others could feel helpful. I felt repulsed over my need ‘to control” and grieved simultaneously the loss of so much of it. I felt completely surrounded by people looking to give me assistance to face a journey that scared me to death. It was the strangest feeling to be so overwhelmed by so much kindness in helping me get ready and get my footing back again while at the same time feeling completely alone.

I knew I would have to walk this path by myself. I knew I wouldn’t be lonely even though it was a solitary journey. I knew many would wander beside me encouraging me along the way, but I also knew I’d have a lot of time to myself.

And so it has come to pass. I have spent 16 months walking this path. I’ve discovered many on parallel paths and I intersected with many more. I’ve taken detours. I’ve hidden out and hunkered down. I’ve stopped and stepped off the path a time or two but all along people have been with me. They’ve been helping me and supporting me. They’ve been cheering with me and for me. They’ve been encouraging me and reminding me of my strength and smarts.

There is so little that you can do that is really truly helpful. I know you’re reading that and thinking, “Did she just say that there’s nothing I can do that is helpful?” I know that sounds kind of harsh because there’s plenty to do that is helpful. But the truth is that so much of that gets done anyway. To this day, I don’t want people to DO anything for me. I want people to be….to be available to hear me when I need to talk out my stress…to be comfortable just showing up and doing whatever the task of the day is…to be comfortable showing up to do nothing at all….to be comfortable letting me be without feeling the need to find solutions, fix problems or make it all go away…to be compassionate and patient because this journey is not a quick fix. It is long and tedious and harsh. All around me people have moved on with their lives as they should and in some ways we have too and in other ways we haven’t and this is hard….to be trusting that I may not always know my needs but eventually I will….to be spontaneous because sometimes that lightens the load more than anything else can.

I have learned, my friends, that what I need, more than anything you can do for me, is to have you share your presence with me….your thoughts, your prayers, your encouragement, your well wishes, your recognition of others going through something similar from what you have learned from me. These are the sustaining forces that keep me going. I often imagine myself walking along this path with you standing in a meadow tossing petals my way, or waving, or singing me a song that is carried on a gentle breeze. Every fiber of my being absorbs this and is the better for it.

We have learned that somehow our actions are more important that our presence. I’d like to suggest that that isn’t true. Sure we feel good about ourselves when we do something that is helpful for someone else. Indeed this is true. But I would ask, were you truly present doing it?

It has been my experience that the greatest healing has come from others simply being with me, sharing their stories, listening to mine, exchanging a bit of humanity. This is not something we are accustomed to doing and it is certainly not something we are taught to do very well. I have come to believe, however, that isn’t so much what you DO that helps but who you ARE that makes all the difference.