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
Sunday, January 31, 2010
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
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
Saturday, January 30, 2010
Aria's graduation
June 16, 2009
Subject: Aria’s graduation
I know I left you hanging, wondering " Did Aria get to her graduation?" After her whole clinic appointment and her counts being down, we wondered whether it was a good idea as well. These kinds of decisions are difficult and aren't made lightly since the consequences can be significant. Still, the healing power of participating in life is immeasurably enormous. Aria was able to attend her graduation and it was wonderful! All the kids were on stage, while Aria was sort of on display in a wheelchair. She was so comfortable sitting there though. We pulled Reo from his class so he could attend and just before the ceremony began he could hardly contain himself. He was on the sideline waving at Aria, dying to go to her. Finally I said, "Reo, just go over to her and give her a big hug!" He had been dancing around wanting to do just that and when I gave him permission he was like a sprinter racing to her. He gave her a big brotherly hug, which elicited from the crowd of at least 100 people a hearty, "Awwwwwww!" Rianna soon followed and I thought I heard an audible *sniff-sniff* here and there. It was touching and beautiful. Many people know about Aria so her presence there was significant and meaningful for everyone.
Aria didn't participate in all of the activities led by her graduating peers. All the kids moving on to kindergarten read a short story from a book. Aria didn't and it felt strange and a little wrong. She is able to read and would have been able to do what her friends were doing but I had no idea this was happening. I had no idea what preparations were being made in general. It is worth noting that Aria attended only 7 days of school since she broke her leg so it is no wonder I had no idea what these kids were doing. Still, I took it to heart to pay more attention next year and to improve my communication with her teacher so she isn't so left out. She had a ball though and it was an incredibly proud moment for everyone.
I'll mention that she is battling a cold right now. Whether she got it from the graduation ceremony is an unknown. It just is. She has a bad cough and the sniffles but so far no fever. This is the first time she's been really low key since the symptoms started on Thursday last week. Up until now she's been high energy and playful. We've been swimming every day, twice a day or more and she has worn herself out. It has been glorious fun. We had an end of year school party on Saturday with a jumping castle. We invited Reo's and Aria's classes to come. We had about 15 kids and their parents here. What a time we had! The kids played, jumped, played, ran, chased, jumped, swam, jumped, dashed, darted, jumped, ate and so forth from 10 am to 10 pm. They were as worn out as I have ever seen them. Poor Reo nearly lost his mind completely from fatigue. The following day, he put himself to bed at 6 30 pm and proceeded to sleep a solid 12 hours! Yesterday, Monday, we swam for hours and played and played, which officially marked our first day of summer holiday. It has been great big fun. Aria has held her own the entire time. I'm hoping her body can fight whatever this little bug is without any major issues. It will be what it will be. We go to clinic on Friday for labs, so we'll know what her counts are then.
All is well here.. more than well and I am so grateful! ~j
Aria's June 2009 Clinic
June 11, 2008’
Subject: Aria’s June Clinic
What a weird few weeks. I wrote about a magnificent oak tree back on May 28, 2009. I was struggling with negativity like a bit of medieval iron chiseled, thick and weighty. I couldn't get rid of it. It has been with me since weighing heavier and heavier. However, as I write today, I'm free of that burden but before I tell you about it, let me tell you about Aria.
Aria is walking on her own much of the time. She tires easily and so I carry her a lot too but it seems less and less. Her foot turns out to the side quite a bit and she drags it occasionally, but that is improving. She is managing well and has found her sense of balance. She is swimming every day and the weightlessness of that experience is glorious. She likes to scream "Cannonball" and then belly flop from the steps into the pool making a big messy splash. She's been absolutely exhausted by bed time because she's been so physical. Aria was scheduled to go to clinic for her monthly chemo and examination on June 9, 2009. Preschool graduation was scheduled this day as well, so last week, I called the clinic to see if we could change her appointment and go later in the day. I hesitated doing this for days and days because this appointment was made months ago and the change I was asking for was last minute. I knew the clinic was going to be busy, so I sort of resigned myself to not even trying. Doc mentioned that I should at least try and the moment he said that it was like the proverbial light bulb going off. "What could be the harm in asking?" I think my hesitation, however, was also woven in that negative fabric I'd been wearing for quite a while and this can make maneuvering tricky and cumbersome. I called and left a message. The scheduling secretary called back and talked to Doc who let me know that it didn't look good. The doctors were already double booked and there was absolutely nothing available later in the day. I let it go at that and accepted that Aria would not be able to attend her graduation ceremony. I told myself, "It is what it is."
Now I have to tell you as philosophically accepting as I can be sometimes, this sucked! In the grand scheme of things, it wasn't that big of a deal but for the last few weeks we'd been navigating several little disappointments. They weren't monumental by any stretch of the imagination nor were they unmanageable but it was starting to feel like 'one more thing after one more thing.' I suppose it started with Aria having to have her cast on for a lot longer than I had imagined. No big deal but at the same time--bummer.
Reo wasn't going to be able to come to clinic with Aria because he had school parties and fun activities planned that he also didn't want to miss. He was extremely conflicted about what to do. He worried, 'But Mama, if I'm not there with Aria, what if something happens to her? I always go to clinic!" He does and he’s missed very few major appointments but it was time for him to make a decision and it was hard. Again, no big deal but it was still a bummer. He wanted to be with Aria and his friends. He finally decided to go to school, miss clinic and Aria. This was a first for him and an enormous leap. I reassured him repeatedly that there would be several other clinic opportunities for him and that seemed to ease his mind. Still, having Reo troubled in this regard weighed on me.
I thought and prepared myself for Aria not being able to attend her graduation with her friends. Once again, Aria would be separate from her peers. This is no big deal in the big picture and yet, what a bummer.
The worst part of it all for me was this strange nagging presence that I couldn't shake. I was beginning to wonder, "Am I becoming like Eeyore? Is there anything positive coming out of my mouth?" I know I try to make the best of it but man, I was starting to feel really bummed out and I hesitated mentioning it for fear of being viewed as a whiner or a complainer. Even the concern over what other people would think was starting to piss me off. I really don't care what others think and why I was succumbing to such a state of unconsciousness was baffling and annoying.
On top of it all, like a nice dollop of fresh whipped cream, I would hear people say repeatedly, "I'm so glad Aria is doing so well!" For whatever reason, that sentence grew like a thorn on a pristine rose and my heart was pierced every time I heard it. Every time it happened I was aghast by a sharp poke of pain to my spirit as well as confusion over why something so innocent, so true, and so wonderful could be so painful. My emotions in this regard were starting to churn and I was beginning to go to a very dark place. It is easy to start projecting anger when this kind of emotional turmoil begins. I've heard countless times, "People just don't get it!" or "I just want to smack someone whenever I hear this or that." I understand these feelings well and it is tempting to respond in this manner but it is elementary and unsubstantiated. When people tell me "Aria is doing so well!" they are speaking the truth but it is only a half truth and that's the part that is disheartening and painful. What people aren't saying is, "Julia, you must be tired. This journey is going on and on and on and you've had no break. Your journey is also now intersecting with a lot of other people and their stories and experiences must weigh heavy." What people often don't acknowledge is this aspect of the march and sometimes it can be unintentionally invalidating.
I keep imagining my clogs and they're covered in mud and slime. My tights are torn, wet, and gross. My feet stink. They have sores and peeling skin that is white and prune-like. I feel like I'm on my last leg sometimes and I can hear people cheering from the distance, "Julia you can still walk!" "Ain't it the truth!" I think, but as I'm slogging along it is all I can do to take another step. It isn't what other people say that is the problem. It is my inability to examine my feelings when they trigger my emotions. When people say these things that are equally true and difficult, they are offering me the gift of insight. I've now learned to bow to them deeply for their gift. Aria's wellness is profound.
The scheduling secretary called me back first thing the following morning and before she had a chance to say anything I said to her, "Jan, Doc told me the situation on June 9th. Please don't worry about it and please don't go through any fiery hoops on our behalf. I wouldn't be able to handle adding any more stress to anyone over there..." She cut me off. "Julia. Stop!" she continued, "It is our pleasure to do this. You can't miss Aria's graduation." At this point, I'm holding my breath and holding back tears. As I'm writing this, I'm in tears. The emotional ride of this journey in some ways is more intense than ever and I find that unnerving. Jan continued, "If you can make it, we have a spot for you tomorrow morning!" I burst into tears. I was so grateful that Dr. Trobaugh would squeeze us in. She wouldn't want me to know this but she put us in between procedures (bone marrow biopsies) for that day. I was completely overwhelmed. I simply was not going to allow myself to invest in the outcome either way but when it was all said and done and I knew Aria would be able to participate in graduation, I was overcome. Poor Jan was at a loss. I rarely lose my composure and I'm sure it was rather unsettling but I'm also certain it was a real reminder to her of just how fragile people can be. Frankly, my emotions took even me by surprise.
This was great news and I was so relieved but it also came with yet another little disappointment. Going to clinic on Friday meant that we would not be able to attend Reo's family barbeque picnic at his school. I explained it to him and although he accepted it, I'm certain he was disappointed and confused. I had to suppress my disappointment too. I couldn't be in two places at once and Doc had to fly to Seattle for the day so there wasn't anything I could do and I felt horrible about that. I called Tata while we were at clinic Friday morning to talk about getting together over the weekend. I mentioned being overwhelmed that we could come to clinic and not miss Aria's big day the following week. I also mentioned missing Reo's party, which was a drag. Tata cut me off, "Hey Julia, what time is the b-b-q?" I told her, "11 o'clock." She replied, "I'm there! I'm totally there!" Oh my God the water works started flowing all over again! Tata mentioned that she had worked a number of those parties in the past and there were always a few kids without family members and it was always rather heart-breaking. I was beyond grateful.
Folks, I don't know what it is but it never occurred to me to ask someone to help. It never entered my mind. I can't tell you why. It doesn't make any sense to me looking on it now. I can only tell you that I didn't have it in me to even entertain what options and possibilities might be available. I was simply trying to process that I wasn't going to be able to be there. I felt completely gripped by the talons of cancer treatment and it was painful and suffocating. Tata's offer was enormous. She was obviously meeting Reo's needs but she was also able to take some pressure off of me. Pressure that I wasn't really aware of until she released it. Tata is a true friend and she is family.
I'll mention that she and Reo had a wonderful time. They sat under a big shade tree eating their lunch. It meant the world to him to have someone with him. It meant the world to me.
Clinic was hard. Clinic is always hard. Every 2 weeks, we've been going there and it doesn't get easier. Some days are different than others but there is always intensity, seriousness, pain, suffering, fear, worry, doubt, dread, sorrow and a sprinkling of nervous laughter and cheer. This day was no different. When we arrived no one was there. Terry, the music therapist was setting up instruments and Rianna jumped at the noise makers and shakers. Aria played for a while too. Before too long kids starting coming in with their mother's and grandmothers. There were no men around. There was little boy probably no more than 8 years old sitting very quietly with his mother. She was serious, aloof, and incredibly guarded. She kept her head down not making eye contact and her son sat very close to her. He was a strange color. It was a mixture of bark gray and army green. He was also incredibly thin. He didn't look well at all and neither did she. "What in the world is going on with them?" I wondered. I also wondered how one cannot notice these people and not wonder about them. There are people like that, you know, and that is their coping style. I think this may be the mother's coping style. She doesn't engage. She doesn't look at other kids. She doesn't talk to anyone. Her son doesn't play or interact. She is there for one purpose and one purpose only. Even though we don't share the same style of coping, we are all simply trying to cope, trying to deal, trying to make sense, trying to hang on. I'm thinking about her now. I'm still wondering about them.
There was also a spitfire little 3 year old that was just full of the dickens. She had everyone giggling. Honestly, glitter was squirting out of her she was so magical and fun. She has a horrible and rare blood disorder that will eventually require a bone marrow transplant but for now she is stable and has been since they diagnosed her condition shortly after her birth. Her mother and grandmother talked about just waiting for the bomb to drop. They're just waiting and watching for symptoms to show up and for her daughter to crash. The agony of that wait is an intensity that I hope I never know. They are trying to enjoy every healthy moment with her that they have because her bone marrow transplant is a 50/50 shot. Enjoying moments under those circumstances is a test of faith that is quite beyond my comprehension. But you know, this is very similar to the scars cancer leaves. The worry and the wonder may fade somewhat over time, but I sincerely doubt it ever goes away completely.
Aria's port was accessed without a hitch. She handles this all so well. We reviewed her medication with Mary, Dr. Trobaugh's nurse. Aria is currently taking roughly 41% of the full dose of chemo. When she takes the full dose her ANC tanks. When she takes 75% of the dose, her ANC tanks. So we've been playing with just below 50% to see if her ANC stabilizes. A month ago her ANC was 830, followed 2 weeks later by a bump up to 1645 and now we were waiting to see what 6 weeks on the same dose would bring. Aria's ANC came back at 800! When Dr. Trobaugh told me this, she was rather matter-of -fact. She was completely unruffled. I, on the other hand, was disturbed. "Dr. Trobaugh, excuse me. " She paused and looked at me. I continued, "You know the movie Willy Wonka and the Chocolate Factory?" She smiled and started to giggle a little. I continued, "You know that scene where they're all on the Wonka boat and there's that freak show happening all around them?" She gave me a wry anticipating, "yeah..." "Well, that's what I feel like I'm on right now!" Dr. Trobaugh burst out laughing, "Oh Julia!" she said, "I just can't imagine." We laughed and laughed. Really, Aria's ANC counts going up and down and up and down are just a freak ride that I would like nothing more than to get off of! I asked her to explain it to me because she seemed as calm as a cucumber whereas I was beginning to see snakes and scorpions and other strange creatures! Now the other really weird part about this whole thing was thinking about having to explain this to you. I was suddenly feeling all insecure about what others would think about my reaction to Aria's check-up. Again, I was letting insecurity and unconsciousness creep in. It was positively exasperating! I started sweating things like, "God, Julia. What's the big deal? Her numbers go up and her numbers go down. That's the name of the game. What are you worried about? Why are you so stressed? She's doing so well..relatively speaking. Why can't you just celebrate that? Why can't you be more positive and happy?" Shit. Right. Why can't I? That question started to haunt me like a dark shadow on a spooky night.
Dr. Trobaugh explained to me that I really needed to consider these fluctuations over a longer period of time versus week to week. She told me that she was basically thrilled with Aria's counts and said more than once that this kind of up and down was all part of it and all well within what she considered fairly normal. She believes that Aria's chemo at 41% is about right for her and was not inclined to change her medication at this time. She also expressed a slight concern that Aria's numbers could tank with a little infection or virus or what not, which is why she wasn't willing to boost her chemo up. She mentioned wanting to check Aria in another 2 weeks and told us to continue being vigilant and pay particular attention to her mosquito bites so they don't get infected. Overall though, Aria continues to do so well. She's just great! Really.
So what's my problem? Well, an ANC of 800 means that Aria shouldn't go to school. It means that she shouldn't be in public at all. It means she ought not to go to her graduation. That's why this is such a freak ride! So over the weekend I basically had to buckle down and make a decision. I pretty much had already decided that come hell or high water, she was going to graduation. But here's the rub. If Aria goes to graduation and nothing happens; no one sneezes on her, no one shows up sick and so forth, this is great. We dodge a virus bullet and it would be worth it. On the other hand, what if she goes and does end up getting some nasty virus and ends up back in the hospital; this is no picnic. This is no fun. This is scary big time every single time. So, would it have been worth it? You tell me. Freak ride!!!!
We went on our merry way. Aria was feeling pretty well until later in the evening when she had to take her medicine. Suddenly out of nowhere she didn't want to take her yellow pills (methotrexate), which is something she takes on Friday and has been taking for well over a year. This was the first time she truly fussed about it. She was so upset that she started gagging and giving the impression that she was going to vomit. As a matter of fact, she did urp up the first round of her medication so we had to give it to her all over again! Doc and I were at a loss. It was so strange and we were so wiped. We are so wiped. This has been a long, long haul. Every single Friday Aria takes 4 different medicines plus her steroids for 5 days a month. It is more than the word exhausting and having this odd tantrum was one more thing.
It could be so much worse and it isn't. We are incredibly grateful for that. Aria is doing super well and we are incredibly grateful for that too. These things aren't enough, however, to get me over the hump and for the life of me, I couldn't figure out why. This was really starting to mess with me and rip me up. I was not able to help Aria through this rough patch with her medicines and neither was Doc. So we let it go for the first time ever and didn't make her take her yellow pills. Doc was extremely kind but firm with her making certain that she understood that under no circumstance would she miss taking them again on a Friday and that she would take them the following evening. Aria was a puddle. She sobbed and sobbed telling us she understood. She was completely depleted and within a matter of 10 minutes was sound asleep.
Saturday morning found me pondering my mood. I kept asking myself, "Why is Aria's wellness not enough to keep you positive and cheerful? Why am I on the verge of tears lately? Aria is doing so well! Why are you feeling so sad?" These thoughts were racing and I was beginning to feel inept, which was odd. I decided to check my email and suddenly I was flooded with bad news. I know several families, intimately, who are in various stages of their cancer odysseys and life for them is very hard. Two families expressed concern over relapses. In both instances, it would be the second relapse and one family has a little boy who has already relapsed from the same leukemia Aria has. He went through treatment the first time without a hitch, just like Aria and then 9 months after his treatment ended, he relapsed. He's been going through treatment again and doing fairly well but the fears this family faces every day are enormous. He's been enduring chemotherapy for 6 years. When I would think about that I suddenly felt this strange sort of survivor's guilt. "What do I have to complain about? Aria is doing awesome and you've only been doing this for a year and a half! It could be so much worse!" I know this to be true but for some reason I couldn't feel it.
All day long this melancholy trailed me well into Sunday when I described to my Goddesses that I felt like I was in some sort of dark well. I was surrounded by stories of others and it was such a challenge not to be taken in by their experience knowing that one day the path they travel may be one I have to travel too. I don't want their experience. Mine is hard enough! I couldn't seem to stop the descent and I felt like I was sort of going crazy. I tearfully told Doc, "I think I have reached the lowest point I've ever been." He gently embraced me and reminded me of the present, which was a perfect gift. Almost despite myself, I focused intensely on the kids in each and every moment. I didn't feel any better but I also didn't feel any worse. I knew, however, that I wasn't thinking about what if something else happens to Aria. In fact, I wasn't thinking about Aria at all. I was thinking about these other kids completely separate from Aria. I know them because of her and our situation but their circumstances were feeling separate from ours. I felt present to them and my heart ached with worry and hope.
Later in the evening I was in bed with the kids. We had just finished reading bed-time stories. I was laying there listening to the birds sing in the trees outside my bedroom. Their songs were in harmony with the gentle breathing I could hear from the kids as they slumbered. It was time to end this melancholy. It was time to understand.
I never realized I was such a visual person. Whenever I read about people visualizing healing such as healthy cells gobbling up cancer cells, I would sort of groan and roll my eyes at what I thought was fantasy or at least a nice daydream. I still sort of think that but I understand that there's a deeper layer involved as well. I was in my bed recognizing that I don't pray. At least I no longer say the prayers of my youth. I think they are beautiful mantras and do wonderful things for the soul but for whatever reason they don't come to me and whenever I've tried to conjure them they play like a piano horribly out of tune. I can't bear to hear them. So I was lying there listening and breathing. I didn't have anything on my mind that had any clarity and the chatter that often entertains me in my head was silent. I was still.
I closed my eyes and I said, "Please show me. I surrender." I had mentioned that well to my Goddesses but as I looked with my mind's eyes along my path a well wasn't what I saw. I was walking along a narrow path surrounded by a meadow when I came upon a pit. But it wasn't really a pit either. It was a sort of cave and even that isn't right. I was like a well, but not really. So, what I saw was this pit-cave-hole-well-type thing that had a rope on the outside coiled loosely on the ground. Clearly, I was meant to grab the rope and descend. I started laughing a little because I'm not interested in spelunking, or rappelling or anything of that nature. Gear, ropes, clips, special clothing and crap are completely unappealing to me. But I grabbed the rope anyway and started to go down when I realized with delight that I wasn't doing anything athletic to get there. I was sitting on a swing! It was a simple wooden board and the ropes were on either side of me. I was descending as if I was on a window washer's platform, gently swinging my legs. It was getting dark and I found myself wishing for a miner's head lamp. I told myself to look deeper. I was going farther down. Below me was bottomless darkness. I was unafraid. I was completely comfortable and felt safe. I looked up and the sky was blue and I could see green grass and knew that a meadow was above me but I was rather disgusted by the image because it was so transparent and basic. I felt like I was gazing upon a Clariton allergy advertisement with the perfect scenery to make one sneeze. I glanced away and began noticing the walls. They had a sort Indiana Jones type feel to them. They were wet, dark and muddy but they were also made of some kind of foundation that looked like stone. There were depressions in the walls but no torches or symbols to see.
Suddenly, my swing stopped and I was suspended in this place. I looked down again and couldn't see anything. I looked up and it was night and the sky was starry and bright. I looked down and I could see infinite space. I looked up and could see infinite space. I was totally secure and calm. And then in a flash I noticed blue sky above me and looked up. There leaning over the edge was Aria haloed in the sun. She looked down at me and said, "Hey Mama, I just pooped on your head!" She vanished in a peel of laughter and I burst out laughing too. I opened my eyes and looked at her sleeping beside me.
I took a deep breath and closed my eyes again. I instantly saw myself back on that swing in the midst of infinite space. I was just sitting there and suddenly got a little nervous. "Now what?" I wondered. Without hesitation I saw myself on my perch and I was peeling and eating peanuts! I guffawed and opened my eyes and said aloud, "Really? Peanuts?" I sighed shaking my head a little and said, "ok!" I closed my eyes and there I was nervously shelling and eating peanuts. I was tossing the shells off my swing but they were neither falling down or up. They simply vanished. A sense of awe came over me and suddenly I noticed the walls were moving away from me. They weren't crumbling or falling apart they were fading as they moved. I was still suspended on my wooden slat in the middle of nothing-everything.
The next thing I knew with both legs in front of me as a final swing, I jumped off and walked away. I opened my eyes and looked at Aria again and realized that all this time it has been her wellness that has enabled me to descend. Her wellness was my rope keeping me safe and secure as I journeyed to where darkness and light meet. I have been able to celebrate her wellness even in the midst of being surrounded by horrible conditions. I have been present. It has been this presence and this wellness that has enabled me to understand that happiness doesn't mean only experiencing what is perceived as positive. Happiness and true joy comes from embracing what is. This is the peace I sensed while in the awe of Aria. I had to embrace some pretty dark thoughts because I am surrounded by dark circumstances but I'm ok. The light of Aria prevails and I understand with almost full clarity that come what may, her light, my light and yours will always be. ~j
Subject: Aria’s June Clinic
What a weird few weeks. I wrote about a magnificent oak tree back on May 28, 2009. I was struggling with negativity like a bit of medieval iron chiseled, thick and weighty. I couldn't get rid of it. It has been with me since weighing heavier and heavier. However, as I write today, I'm free of that burden but before I tell you about it, let me tell you about Aria.
Aria is walking on her own much of the time. She tires easily and so I carry her a lot too but it seems less and less. Her foot turns out to the side quite a bit and she drags it occasionally, but that is improving. She is managing well and has found her sense of balance. She is swimming every day and the weightlessness of that experience is glorious. She likes to scream "Cannonball" and then belly flop from the steps into the pool making a big messy splash. She's been absolutely exhausted by bed time because she's been so physical. Aria was scheduled to go to clinic for her monthly chemo and examination on June 9, 2009. Preschool graduation was scheduled this day as well, so last week, I called the clinic to see if we could change her appointment and go later in the day. I hesitated doing this for days and days because this appointment was made months ago and the change I was asking for was last minute. I knew the clinic was going to be busy, so I sort of resigned myself to not even trying. Doc mentioned that I should at least try and the moment he said that it was like the proverbial light bulb going off. "What could be the harm in asking?" I think my hesitation, however, was also woven in that negative fabric I'd been wearing for quite a while and this can make maneuvering tricky and cumbersome. I called and left a message. The scheduling secretary called back and talked to Doc who let me know that it didn't look good. The doctors were already double booked and there was absolutely nothing available later in the day. I let it go at that and accepted that Aria would not be able to attend her graduation ceremony. I told myself, "It is what it is."
Now I have to tell you as philosophically accepting as I can be sometimes, this sucked! In the grand scheme of things, it wasn't that big of a deal but for the last few weeks we'd been navigating several little disappointments. They weren't monumental by any stretch of the imagination nor were they unmanageable but it was starting to feel like 'one more thing after one more thing.' I suppose it started with Aria having to have her cast on for a lot longer than I had imagined. No big deal but at the same time--bummer.
Reo wasn't going to be able to come to clinic with Aria because he had school parties and fun activities planned that he also didn't want to miss. He was extremely conflicted about what to do. He worried, 'But Mama, if I'm not there with Aria, what if something happens to her? I always go to clinic!" He does and he’s missed very few major appointments but it was time for him to make a decision and it was hard. Again, no big deal but it was still a bummer. He wanted to be with Aria and his friends. He finally decided to go to school, miss clinic and Aria. This was a first for him and an enormous leap. I reassured him repeatedly that there would be several other clinic opportunities for him and that seemed to ease his mind. Still, having Reo troubled in this regard weighed on me.
I thought and prepared myself for Aria not being able to attend her graduation with her friends. Once again, Aria would be separate from her peers. This is no big deal in the big picture and yet, what a bummer.
The worst part of it all for me was this strange nagging presence that I couldn't shake. I was beginning to wonder, "Am I becoming like Eeyore? Is there anything positive coming out of my mouth?" I know I try to make the best of it but man, I was starting to feel really bummed out and I hesitated mentioning it for fear of being viewed as a whiner or a complainer. Even the concern over what other people would think was starting to piss me off. I really don't care what others think and why I was succumbing to such a state of unconsciousness was baffling and annoying.
On top of it all, like a nice dollop of fresh whipped cream, I would hear people say repeatedly, "I'm so glad Aria is doing so well!" For whatever reason, that sentence grew like a thorn on a pristine rose and my heart was pierced every time I heard it. Every time it happened I was aghast by a sharp poke of pain to my spirit as well as confusion over why something so innocent, so true, and so wonderful could be so painful. My emotions in this regard were starting to churn and I was beginning to go to a very dark place. It is easy to start projecting anger when this kind of emotional turmoil begins. I've heard countless times, "People just don't get it!" or "I just want to smack someone whenever I hear this or that." I understand these feelings well and it is tempting to respond in this manner but it is elementary and unsubstantiated. When people tell me "Aria is doing so well!" they are speaking the truth but it is only a half truth and that's the part that is disheartening and painful. What people aren't saying is, "Julia, you must be tired. This journey is going on and on and on and you've had no break. Your journey is also now intersecting with a lot of other people and their stories and experiences must weigh heavy." What people often don't acknowledge is this aspect of the march and sometimes it can be unintentionally invalidating.
I keep imagining my clogs and they're covered in mud and slime. My tights are torn, wet, and gross. My feet stink. They have sores and peeling skin that is white and prune-like. I feel like I'm on my last leg sometimes and I can hear people cheering from the distance, "Julia you can still walk!" "Ain't it the truth!" I think, but as I'm slogging along it is all I can do to take another step. It isn't what other people say that is the problem. It is my inability to examine my feelings when they trigger my emotions. When people say these things that are equally true and difficult, they are offering me the gift of insight. I've now learned to bow to them deeply for their gift. Aria's wellness is profound.
The scheduling secretary called me back first thing the following morning and before she had a chance to say anything I said to her, "Jan, Doc told me the situation on June 9th. Please don't worry about it and please don't go through any fiery hoops on our behalf. I wouldn't be able to handle adding any more stress to anyone over there..." She cut me off. "Julia. Stop!" she continued, "It is our pleasure to do this. You can't miss Aria's graduation." At this point, I'm holding my breath and holding back tears. As I'm writing this, I'm in tears. The emotional ride of this journey in some ways is more intense than ever and I find that unnerving. Jan continued, "If you can make it, we have a spot for you tomorrow morning!" I burst into tears. I was so grateful that Dr. Trobaugh would squeeze us in. She wouldn't want me to know this but she put us in between procedures (bone marrow biopsies) for that day. I was completely overwhelmed. I simply was not going to allow myself to invest in the outcome either way but when it was all said and done and I knew Aria would be able to participate in graduation, I was overcome. Poor Jan was at a loss. I rarely lose my composure and I'm sure it was rather unsettling but I'm also certain it was a real reminder to her of just how fragile people can be. Frankly, my emotions took even me by surprise.
This was great news and I was so relieved but it also came with yet another little disappointment. Going to clinic on Friday meant that we would not be able to attend Reo's family barbeque picnic at his school. I explained it to him and although he accepted it, I'm certain he was disappointed and confused. I had to suppress my disappointment too. I couldn't be in two places at once and Doc had to fly to Seattle for the day so there wasn't anything I could do and I felt horrible about that. I called Tata while we were at clinic Friday morning to talk about getting together over the weekend. I mentioned being overwhelmed that we could come to clinic and not miss Aria's big day the following week. I also mentioned missing Reo's party, which was a drag. Tata cut me off, "Hey Julia, what time is the b-b-q?" I told her, "11 o'clock." She replied, "I'm there! I'm totally there!" Oh my God the water works started flowing all over again! Tata mentioned that she had worked a number of those parties in the past and there were always a few kids without family members and it was always rather heart-breaking. I was beyond grateful.
Folks, I don't know what it is but it never occurred to me to ask someone to help. It never entered my mind. I can't tell you why. It doesn't make any sense to me looking on it now. I can only tell you that I didn't have it in me to even entertain what options and possibilities might be available. I was simply trying to process that I wasn't going to be able to be there. I felt completely gripped by the talons of cancer treatment and it was painful and suffocating. Tata's offer was enormous. She was obviously meeting Reo's needs but she was also able to take some pressure off of me. Pressure that I wasn't really aware of until she released it. Tata is a true friend and she is family.
I'll mention that she and Reo had a wonderful time. They sat under a big shade tree eating their lunch. It meant the world to him to have someone with him. It meant the world to me.
Clinic was hard. Clinic is always hard. Every 2 weeks, we've been going there and it doesn't get easier. Some days are different than others but there is always intensity, seriousness, pain, suffering, fear, worry, doubt, dread, sorrow and a sprinkling of nervous laughter and cheer. This day was no different. When we arrived no one was there. Terry, the music therapist was setting up instruments and Rianna jumped at the noise makers and shakers. Aria played for a while too. Before too long kids starting coming in with their mother's and grandmothers. There were no men around. There was little boy probably no more than 8 years old sitting very quietly with his mother. She was serious, aloof, and incredibly guarded. She kept her head down not making eye contact and her son sat very close to her. He was a strange color. It was a mixture of bark gray and army green. He was also incredibly thin. He didn't look well at all and neither did she. "What in the world is going on with them?" I wondered. I also wondered how one cannot notice these people and not wonder about them. There are people like that, you know, and that is their coping style. I think this may be the mother's coping style. She doesn't engage. She doesn't look at other kids. She doesn't talk to anyone. Her son doesn't play or interact. She is there for one purpose and one purpose only. Even though we don't share the same style of coping, we are all simply trying to cope, trying to deal, trying to make sense, trying to hang on. I'm thinking about her now. I'm still wondering about them.
There was also a spitfire little 3 year old that was just full of the dickens. She had everyone giggling. Honestly, glitter was squirting out of her she was so magical and fun. She has a horrible and rare blood disorder that will eventually require a bone marrow transplant but for now she is stable and has been since they diagnosed her condition shortly after her birth. Her mother and grandmother talked about just waiting for the bomb to drop. They're just waiting and watching for symptoms to show up and for her daughter to crash. The agony of that wait is an intensity that I hope I never know. They are trying to enjoy every healthy moment with her that they have because her bone marrow transplant is a 50/50 shot. Enjoying moments under those circumstances is a test of faith that is quite beyond my comprehension. But you know, this is very similar to the scars cancer leaves. The worry and the wonder may fade somewhat over time, but I sincerely doubt it ever goes away completely.
Aria's port was accessed without a hitch. She handles this all so well. We reviewed her medication with Mary, Dr. Trobaugh's nurse. Aria is currently taking roughly 41% of the full dose of chemo. When she takes the full dose her ANC tanks. When she takes 75% of the dose, her ANC tanks. So we've been playing with just below 50% to see if her ANC stabilizes. A month ago her ANC was 830, followed 2 weeks later by a bump up to 1645 and now we were waiting to see what 6 weeks on the same dose would bring. Aria's ANC came back at 800! When Dr. Trobaugh told me this, she was rather matter-of -fact. She was completely unruffled. I, on the other hand, was disturbed. "Dr. Trobaugh, excuse me. " She paused and looked at me. I continued, "You know the movie Willy Wonka and the Chocolate Factory?" She smiled and started to giggle a little. I continued, "You know that scene where they're all on the Wonka boat and there's that freak show happening all around them?" She gave me a wry anticipating, "yeah..." "Well, that's what I feel like I'm on right now!" Dr. Trobaugh burst out laughing, "Oh Julia!" she said, "I just can't imagine." We laughed and laughed. Really, Aria's ANC counts going up and down and up and down are just a freak ride that I would like nothing more than to get off of! I asked her to explain it to me because she seemed as calm as a cucumber whereas I was beginning to see snakes and scorpions and other strange creatures! Now the other really weird part about this whole thing was thinking about having to explain this to you. I was suddenly feeling all insecure about what others would think about my reaction to Aria's check-up. Again, I was letting insecurity and unconsciousness creep in. It was positively exasperating! I started sweating things like, "God, Julia. What's the big deal? Her numbers go up and her numbers go down. That's the name of the game. What are you worried about? Why are you so stressed? She's doing so well..relatively speaking. Why can't you just celebrate that? Why can't you be more positive and happy?" Shit. Right. Why can't I? That question started to haunt me like a dark shadow on a spooky night.
Dr. Trobaugh explained to me that I really needed to consider these fluctuations over a longer period of time versus week to week. She told me that she was basically thrilled with Aria's counts and said more than once that this kind of up and down was all part of it and all well within what she considered fairly normal. She believes that Aria's chemo at 41% is about right for her and was not inclined to change her medication at this time. She also expressed a slight concern that Aria's numbers could tank with a little infection or virus or what not, which is why she wasn't willing to boost her chemo up. She mentioned wanting to check Aria in another 2 weeks and told us to continue being vigilant and pay particular attention to her mosquito bites so they don't get infected. Overall though, Aria continues to do so well. She's just great! Really.
So what's my problem? Well, an ANC of 800 means that Aria shouldn't go to school. It means that she shouldn't be in public at all. It means she ought not to go to her graduation. That's why this is such a freak ride! So over the weekend I basically had to buckle down and make a decision. I pretty much had already decided that come hell or high water, she was going to graduation. But here's the rub. If Aria goes to graduation and nothing happens; no one sneezes on her, no one shows up sick and so forth, this is great. We dodge a virus bullet and it would be worth it. On the other hand, what if she goes and does end up getting some nasty virus and ends up back in the hospital; this is no picnic. This is no fun. This is scary big time every single time. So, would it have been worth it? You tell me. Freak ride!!!!
We went on our merry way. Aria was feeling pretty well until later in the evening when she had to take her medicine. Suddenly out of nowhere she didn't want to take her yellow pills (methotrexate), which is something she takes on Friday and has been taking for well over a year. This was the first time she truly fussed about it. She was so upset that she started gagging and giving the impression that she was going to vomit. As a matter of fact, she did urp up the first round of her medication so we had to give it to her all over again! Doc and I were at a loss. It was so strange and we were so wiped. We are so wiped. This has been a long, long haul. Every single Friday Aria takes 4 different medicines plus her steroids for 5 days a month. It is more than the word exhausting and having this odd tantrum was one more thing.
It could be so much worse and it isn't. We are incredibly grateful for that. Aria is doing super well and we are incredibly grateful for that too. These things aren't enough, however, to get me over the hump and for the life of me, I couldn't figure out why. This was really starting to mess with me and rip me up. I was not able to help Aria through this rough patch with her medicines and neither was Doc. So we let it go for the first time ever and didn't make her take her yellow pills. Doc was extremely kind but firm with her making certain that she understood that under no circumstance would she miss taking them again on a Friday and that she would take them the following evening. Aria was a puddle. She sobbed and sobbed telling us she understood. She was completely depleted and within a matter of 10 minutes was sound asleep.
Saturday morning found me pondering my mood. I kept asking myself, "Why is Aria's wellness not enough to keep you positive and cheerful? Why am I on the verge of tears lately? Aria is doing so well! Why are you feeling so sad?" These thoughts were racing and I was beginning to feel inept, which was odd. I decided to check my email and suddenly I was flooded with bad news. I know several families, intimately, who are in various stages of their cancer odysseys and life for them is very hard. Two families expressed concern over relapses. In both instances, it would be the second relapse and one family has a little boy who has already relapsed from the same leukemia Aria has. He went through treatment the first time without a hitch, just like Aria and then 9 months after his treatment ended, he relapsed. He's been going through treatment again and doing fairly well but the fears this family faces every day are enormous. He's been enduring chemotherapy for 6 years. When I would think about that I suddenly felt this strange sort of survivor's guilt. "What do I have to complain about? Aria is doing awesome and you've only been doing this for a year and a half! It could be so much worse!" I know this to be true but for some reason I couldn't feel it.
All day long this melancholy trailed me well into Sunday when I described to my Goddesses that I felt like I was in some sort of dark well. I was surrounded by stories of others and it was such a challenge not to be taken in by their experience knowing that one day the path they travel may be one I have to travel too. I don't want their experience. Mine is hard enough! I couldn't seem to stop the descent and I felt like I was sort of going crazy. I tearfully told Doc, "I think I have reached the lowest point I've ever been." He gently embraced me and reminded me of the present, which was a perfect gift. Almost despite myself, I focused intensely on the kids in each and every moment. I didn't feel any better but I also didn't feel any worse. I knew, however, that I wasn't thinking about what if something else happens to Aria. In fact, I wasn't thinking about Aria at all. I was thinking about these other kids completely separate from Aria. I know them because of her and our situation but their circumstances were feeling separate from ours. I felt present to them and my heart ached with worry and hope.
Later in the evening I was in bed with the kids. We had just finished reading bed-time stories. I was laying there listening to the birds sing in the trees outside my bedroom. Their songs were in harmony with the gentle breathing I could hear from the kids as they slumbered. It was time to end this melancholy. It was time to understand.
I never realized I was such a visual person. Whenever I read about people visualizing healing such as healthy cells gobbling up cancer cells, I would sort of groan and roll my eyes at what I thought was fantasy or at least a nice daydream. I still sort of think that but I understand that there's a deeper layer involved as well. I was in my bed recognizing that I don't pray. At least I no longer say the prayers of my youth. I think they are beautiful mantras and do wonderful things for the soul but for whatever reason they don't come to me and whenever I've tried to conjure them they play like a piano horribly out of tune. I can't bear to hear them. So I was lying there listening and breathing. I didn't have anything on my mind that had any clarity and the chatter that often entertains me in my head was silent. I was still.
I closed my eyes and I said, "Please show me. I surrender." I had mentioned that well to my Goddesses but as I looked with my mind's eyes along my path a well wasn't what I saw. I was walking along a narrow path surrounded by a meadow when I came upon a pit. But it wasn't really a pit either. It was a sort of cave and even that isn't right. I was like a well, but not really. So, what I saw was this pit-cave-hole-well-type thing that had a rope on the outside coiled loosely on the ground. Clearly, I was meant to grab the rope and descend. I started laughing a little because I'm not interested in spelunking, or rappelling or anything of that nature. Gear, ropes, clips, special clothing and crap are completely unappealing to me. But I grabbed the rope anyway and started to go down when I realized with delight that I wasn't doing anything athletic to get there. I was sitting on a swing! It was a simple wooden board and the ropes were on either side of me. I was descending as if I was on a window washer's platform, gently swinging my legs. It was getting dark and I found myself wishing for a miner's head lamp. I told myself to look deeper. I was going farther down. Below me was bottomless darkness. I was unafraid. I was completely comfortable and felt safe. I looked up and the sky was blue and I could see green grass and knew that a meadow was above me but I was rather disgusted by the image because it was so transparent and basic. I felt like I was gazing upon a Clariton allergy advertisement with the perfect scenery to make one sneeze. I glanced away and began noticing the walls. They had a sort Indiana Jones type feel to them. They were wet, dark and muddy but they were also made of some kind of foundation that looked like stone. There were depressions in the walls but no torches or symbols to see.
Suddenly, my swing stopped and I was suspended in this place. I looked down again and couldn't see anything. I looked up and it was night and the sky was starry and bright. I looked down and I could see infinite space. I looked up and could see infinite space. I was totally secure and calm. And then in a flash I noticed blue sky above me and looked up. There leaning over the edge was Aria haloed in the sun. She looked down at me and said, "Hey Mama, I just pooped on your head!" She vanished in a peel of laughter and I burst out laughing too. I opened my eyes and looked at her sleeping beside me.
I took a deep breath and closed my eyes again. I instantly saw myself back on that swing in the midst of infinite space. I was just sitting there and suddenly got a little nervous. "Now what?" I wondered. Without hesitation I saw myself on my perch and I was peeling and eating peanuts! I guffawed and opened my eyes and said aloud, "Really? Peanuts?" I sighed shaking my head a little and said, "ok!" I closed my eyes and there I was nervously shelling and eating peanuts. I was tossing the shells off my swing but they were neither falling down or up. They simply vanished. A sense of awe came over me and suddenly I noticed the walls were moving away from me. They weren't crumbling or falling apart they were fading as they moved. I was still suspended on my wooden slat in the middle of nothing-everything.
The next thing I knew with both legs in front of me as a final swing, I jumped off and walked away. I opened my eyes and looked at Aria again and realized that all this time it has been her wellness that has enabled me to descend. Her wellness was my rope keeping me safe and secure as I journeyed to where darkness and light meet. I have been able to celebrate her wellness even in the midst of being surrounded by horrible conditions. I have been present. It has been this presence and this wellness that has enabled me to understand that happiness doesn't mean only experiencing what is perceived as positive. Happiness and true joy comes from embracing what is. This is the peace I sensed while in the awe of Aria. I had to embrace some pretty dark thoughts because I am surrounded by dark circumstances but I'm ok. The light of Aria prevails and I understand with almost full clarity that come what may, her light, my light and yours will always be. ~j
Aria went back to school!
May 28, 2009
Subject: Aria went back to school!!
The reunion was magnificent. Everyone was so thrilled to see her. There were even a few happy tears. Aria has been out of school for a month if you can believe that! She broke her leg on April 29th and I know what you're thinking. It's been a month already? It really has and luckily it has gone by pretty fast.
Aria went to the clinic on Tuesday for a count check. Her ANC was 1645, which is a lot better than 830 from 2 weeks ago. So, she got the green light to head back to school. She was beside herself and could not wait to show off her cast and see her friends. I dropped her off in her class room around 8 20 yesterday morning and by 10 am I got a call from her teacher saying that Aria was really tired and wanted to come home. She made it 90 minutes! The poor thing was completely overwhelmed. Doc went to pick her up and she had fallen asleep at the activity table.
It is so odd to me because looking at her, she doesn't seem that tired or sensitive to being worn out. At home she is positive, light-hearted and full of real energy. I was so excited for her to be in school. It felt healthy and full of wellness so it was sort of shattering to get a call from the school saying that she needed to come home an hour early. I understand that it has been a month so everything was new again. She was more than likely completely over-stimulated, which tuckered her out. I'm basically in awe of it is all.
She wasn't able to handle 2 1/2 hours of preschool. That was too much. You know what, that is a reminder to me that we are STILL dealing with something incredibly intense and it sort of breaks my heart. Plain and simple. I'm a bit heart-broken. I'm also celebratory because she was able to go for 90 minutes and I cherish that. But you see, I'm waffling between these extremes and it has me a bit befuddled.
Now mind you, Aria not being able to finish her morning of preschool is not the cause of my present bit of melancholy. No, that has been percolating for a few days. Memorial weekend hit me hard for some reason. I was remembering several kids I knew who died this past year. I was thinking of their families and how they've been coping and adapting. I don't know. It was heart-wrenching. It is heart-wrenching. Naturally, I want more than anything to know that when we're done with treatment in 11 months that we'll be done. But the truth is that we don't know. We have to wait and see. I can't tell you how much I hate that. I've been doing the wait and see thing for 16 long months already and every finger poke, port access, and spinal tap is an enormous surge of ,"Oh my God, is everything ok or has it come back?" That surge is not going to go away any time soon and I wouldn't be honest if I didn't tell you that it is absolutely exhausting. It isn't a place I dwell so that anxiety isn't something that is always red hot on my radar, but it is always there. It becomes red hot in strange little glimpses on clinic days that happen regularly every 2 weeks. It isn't something I can 'just let go' of. It is something I have to carry but I haven't figure out how to do that very well, yet. It is a cumbersome load that sometimes rubs me raw, makes me cry, pisses me off, or makes me feel blue because I'm sick of lugging it around! I'd love to give it to someone else to carry for a brief stretch but I can't. I accept that and I know that but sometimes I don't like it. I feel compelled to write about it because it is so easy to convince myself that I have to be positive all the time and in order to be positive and optimistic I have to 'suck it up. I have to suppress these bits of angst when they surface. I can't do that. I get sick when I do that. I have to purge my mind and body of those nasty little pest-like thoughts otherwise it becomes a blown-out infestation. So I write about it. I admit when I'm down and I'm no longer held captive by these negative thoughts, these moments of self-pity, and these periods of anxiety. Instead, I have found them to be masterful teachers lending themselves as lessons for greater peace of mind.
As I pause here for a moment and enjoy a bit of silence I can hear the wind and it reveals to me that I'm looking too far into the distance. I'm looking outward hoping to see something that will lighten my load or change its configuration so it rides better. The music in the wind reminds me that I need to look deeper into my own pockets. I'm sure mixed with all the grit and lint that defines me I'll find the tool I need and I'll feel more sure-footed. I can hear the wind whisper, "Julia, you've said your peace. You've admitted your woe for this brief period of time. Now let me carry it away."
I sense a ray of hope building. I'm reminded that I had 90 minutes of gardening while Aria was in school that I didn't have last year. It isn't much and yet it is enormous. Aria is gaining strength and confidence. I can hear, for example, her coming down the hallway upstairs because her cast is making a scraping sound across the hard wood floors. She's able to lift herself onto the potty and she's basically scooting herself all over the place. She's laughing and telling poop and pee jokes constantly. She’s curious about reading and loves to listen to music. She is excited about summer and swimming in our pool. She is tender and considerate. She is exasperating and whiney. She is the full spectrum and I celebrate every aspect that defines her. She has leukemia and the ravages of that remain with us. Some of those horrors are less and many of them are not. She reminds us of impermanence and has been a great teacher of moments. She is an old soul full of holiness. She has forced me to grow and not all of that has been easy or pain-free but it has been growth nevertheless and I am stronger as a result.
The load I carry is a heavy one but I'm capable of carrying it. I get sick of it and sometimes would like nothing more than to be free of it but the freedom I seek is a state of mind not a physical one. I'm learning to pause when these times of burn-out arise rather than grind my teeth and trudge on through, ignoring my feelings because they appear less than optimistic. Being real, being honest and being true gives me far more stamina than just being positive ever could. As a matter of fact, it brings me closer to my true self and I'm less fearful of that.
As I was sitting here typing this image of a large oak tree suddenly flooded my senses. The leaves were a bright and brilliant green that shimmered in the sun. The branches of this massive life were reaching and stretching to the sky as if expressing a grand salutation. The bark was brown with a grey hue, fissures coursing like veins and capillaries, making me wonder if they match the grounding roots below. Just within my reach were small withered branches with dry dead leaves. I found myself staring at them saying, "Magnificent oak, these must be your negative feelings!" They do little to detract from the majesty of this grand old tree but they are there worthy of some attention. I break them off the tree. They surrender with ease. I know more will grow and I will tend to them as they appear. In the meantime, I crumple the leaves in my hands. They smell rich and earthy that appeals to my native spirit. I hear the wind again. I hold out my hands exposing this leafy confetti and with my own withered dry negativity I watch the wind take it away. ~j
Subject: Aria went back to school!!
The reunion was magnificent. Everyone was so thrilled to see her. There were even a few happy tears. Aria has been out of school for a month if you can believe that! She broke her leg on April 29th and I know what you're thinking. It's been a month already? It really has and luckily it has gone by pretty fast.
Aria went to the clinic on Tuesday for a count check. Her ANC was 1645, which is a lot better than 830 from 2 weeks ago. So, she got the green light to head back to school. She was beside herself and could not wait to show off her cast and see her friends. I dropped her off in her class room around 8 20 yesterday morning and by 10 am I got a call from her teacher saying that Aria was really tired and wanted to come home. She made it 90 minutes! The poor thing was completely overwhelmed. Doc went to pick her up and she had fallen asleep at the activity table.
It is so odd to me because looking at her, she doesn't seem that tired or sensitive to being worn out. At home she is positive, light-hearted and full of real energy. I was so excited for her to be in school. It felt healthy and full of wellness so it was sort of shattering to get a call from the school saying that she needed to come home an hour early. I understand that it has been a month so everything was new again. She was more than likely completely over-stimulated, which tuckered her out. I'm basically in awe of it is all.
She wasn't able to handle 2 1/2 hours of preschool. That was too much. You know what, that is a reminder to me that we are STILL dealing with something incredibly intense and it sort of breaks my heart. Plain and simple. I'm a bit heart-broken. I'm also celebratory because she was able to go for 90 minutes and I cherish that. But you see, I'm waffling between these extremes and it has me a bit befuddled.
Now mind you, Aria not being able to finish her morning of preschool is not the cause of my present bit of melancholy. No, that has been percolating for a few days. Memorial weekend hit me hard for some reason. I was remembering several kids I knew who died this past year. I was thinking of their families and how they've been coping and adapting. I don't know. It was heart-wrenching. It is heart-wrenching. Naturally, I want more than anything to know that when we're done with treatment in 11 months that we'll be done. But the truth is that we don't know. We have to wait and see. I can't tell you how much I hate that. I've been doing the wait and see thing for 16 long months already and every finger poke, port access, and spinal tap is an enormous surge of ,"Oh my God, is everything ok or has it come back?" That surge is not going to go away any time soon and I wouldn't be honest if I didn't tell you that it is absolutely exhausting. It isn't a place I dwell so that anxiety isn't something that is always red hot on my radar, but it is always there. It becomes red hot in strange little glimpses on clinic days that happen regularly every 2 weeks. It isn't something I can 'just let go' of. It is something I have to carry but I haven't figure out how to do that very well, yet. It is a cumbersome load that sometimes rubs me raw, makes me cry, pisses me off, or makes me feel blue because I'm sick of lugging it around! I'd love to give it to someone else to carry for a brief stretch but I can't. I accept that and I know that but sometimes I don't like it. I feel compelled to write about it because it is so easy to convince myself that I have to be positive all the time and in order to be positive and optimistic I have to 'suck it up. I have to suppress these bits of angst when they surface. I can't do that. I get sick when I do that. I have to purge my mind and body of those nasty little pest-like thoughts otherwise it becomes a blown-out infestation. So I write about it. I admit when I'm down and I'm no longer held captive by these negative thoughts, these moments of self-pity, and these periods of anxiety. Instead, I have found them to be masterful teachers lending themselves as lessons for greater peace of mind.
As I pause here for a moment and enjoy a bit of silence I can hear the wind and it reveals to me that I'm looking too far into the distance. I'm looking outward hoping to see something that will lighten my load or change its configuration so it rides better. The music in the wind reminds me that I need to look deeper into my own pockets. I'm sure mixed with all the grit and lint that defines me I'll find the tool I need and I'll feel more sure-footed. I can hear the wind whisper, "Julia, you've said your peace. You've admitted your woe for this brief period of time. Now let me carry it away."
I sense a ray of hope building. I'm reminded that I had 90 minutes of gardening while Aria was in school that I didn't have last year. It isn't much and yet it is enormous. Aria is gaining strength and confidence. I can hear, for example, her coming down the hallway upstairs because her cast is making a scraping sound across the hard wood floors. She's able to lift herself onto the potty and she's basically scooting herself all over the place. She's laughing and telling poop and pee jokes constantly. She’s curious about reading and loves to listen to music. She is excited about summer and swimming in our pool. She is tender and considerate. She is exasperating and whiney. She is the full spectrum and I celebrate every aspect that defines her. She has leukemia and the ravages of that remain with us. Some of those horrors are less and many of them are not. She reminds us of impermanence and has been a great teacher of moments. She is an old soul full of holiness. She has forced me to grow and not all of that has been easy or pain-free but it has been growth nevertheless and I am stronger as a result.
The load I carry is a heavy one but I'm capable of carrying it. I get sick of it and sometimes would like nothing more than to be free of it but the freedom I seek is a state of mind not a physical one. I'm learning to pause when these times of burn-out arise rather than grind my teeth and trudge on through, ignoring my feelings because they appear less than optimistic. Being real, being honest and being true gives me far more stamina than just being positive ever could. As a matter of fact, it brings me closer to my true self and I'm less fearful of that.
As I was sitting here typing this image of a large oak tree suddenly flooded my senses. The leaves were a bright and brilliant green that shimmered in the sun. The branches of this massive life were reaching and stretching to the sky as if expressing a grand salutation. The bark was brown with a grey hue, fissures coursing like veins and capillaries, making me wonder if they match the grounding roots below. Just within my reach were small withered branches with dry dead leaves. I found myself staring at them saying, "Magnificent oak, these must be your negative feelings!" They do little to detract from the majesty of this grand old tree but they are there worthy of some attention. I break them off the tree. They surrender with ease. I know more will grow and I will tend to them as they appear. In the meantime, I crumple the leaves in my hands. They smell rich and earthy that appeals to my native spirit. I hear the wind again. I hold out my hands exposing this leafy confetti and with my own withered dry negativity I watch the wind take it away. ~j
2 more weeks to go!!
May 20, 2009
Subject: 2 more weeks to go!!
Aria never ceases to amaze me! She has spent the last 2 weeks healing. She's been so content to be moved from one couch to another only wanting to lie there and rest. She hasn't wanted to color or paint or craft or even play with toys. Her spirits have nevertheless remained high. She has complained a few times about her cast 'not being fair' and just the other day she whimpered through her tears, "It's not fair that I have leukemia!" This is the first time anything like that has been expressed. I'll mention that I believe her but I also know that it is compounded by the fact that she's been on steroids. I'm certain it isn't the voice of steroids realizing just how unfair her hand of fate is but I'm quite convinced that it's been an influence. I sat with her on the bed while she cried and felt sorry for herself. I didn't tell her to stop crying. I also didn't mention that she was feeling sorry for herself. These are important things to do and to experience when they come up. So, I agreed with her. It isn't fair that she has a cast and has leukemia. It isn't but then again, what is? I didn't ask her that. Instead, I told her, "Aria, you are absolutely right. It isn't fair that you have leukemia and have to be stuck wearing that pretty cast!" She looked at me tearfully and gave a little sob. I continued, “But tell me, what do you want to do about it?" She stopped crying instantly and immediately gave me a, "huh?" She looked right into my eyes, searching. I shrugged my shoulders and said, "Yeah. I don't understand it but sometimes lots of things happen in life that just aren't fair. They aren't. So..... what should we do?" She was thoughtful and said with her old soul kind of seriousness, "I just don't know Mama." I told her, "I have an idea." Her eyes were wide glued to mine. "How about we just take it as it comes like warriors." Her eyes brightened and she squealed, "I'm a warrior!" to which I replied, "I know. You're an amazing warrior." "Hey Mama, "she said, "you're a warrior too!" I smiled and giggled and told her, "I am a warrior and I've become a smarter warrior because of you!" She groaned and giggled and flopped herself on the pillows, "Oh Mama! You're a poop!"
Last night Aria tested herself and her cast. She's been playing on the floor a little and scooting around some but hasn't wanted to venture very far. Last night with Doc around I don't know what happened but suddenly Aria was inspired. She was scooting all over the floor. She lifted herself onto the couch and figured out how to crawl down. She was playful and energetic and couldn't wait to show me how quick she could scamper dragging her casted leg. She asked me in a sort of 'under the table' kind of way, "Hey Mama, you think I could try going down the stairs?" I told her, "Absolutely! Come on!" She scooted to the stairs and a little fright came upon her. I sat down with her and said, "Come on, honey. I'll show you how. Just follow me!" Before I knew it she was right behind me coming down the stairs. This morning she has been up and down the stairs herself and scooting all over!
I tell you, I am convinced this is Doc's doing. He enables her to feel safe pushing the boundaries. Aria has no interest in trying these kinds of things with me. I'm the person she wants to hunker down with. Doc is someone she wants to play with and move with. She has a different sense of safety and security with him. I think this is extraordinary. I was thrilled to see this change in her. She's feeling more and more confident. I'm certain that if her counts are higher than 830 next Tuesday when we go in for labs that she'll be able to go to school for a few days. She's thrilled about showing off her cast to her friends. On June 3rd, we return to the orthopedic clinic and have her leg examined to see if it has healed enough for the boot cast and then she'll be practically as good as new!
All of us are experiencing a moment here of true wellness! We had a wonderful weekend at the lake. It was a short get away but it was a get away. Doc and I were able to have lengthy conversations. We were able to play on the beach. We all felt increasingly confident and ready to take ourselves out of our comfort zones a little. It was just lovely!
I feel like I have a wonderful stride going. I'm healthy. I'm strong. I'm vibrant and resilient. I thought I was on a survivor's path but I realize now that I'm not. I'm making one and it is the way of a warrior. ~j
Subject: 2 more weeks to go!!
Aria never ceases to amaze me! She has spent the last 2 weeks healing. She's been so content to be moved from one couch to another only wanting to lie there and rest. She hasn't wanted to color or paint or craft or even play with toys. Her spirits have nevertheless remained high. She has complained a few times about her cast 'not being fair' and just the other day she whimpered through her tears, "It's not fair that I have leukemia!" This is the first time anything like that has been expressed. I'll mention that I believe her but I also know that it is compounded by the fact that she's been on steroids. I'm certain it isn't the voice of steroids realizing just how unfair her hand of fate is but I'm quite convinced that it's been an influence. I sat with her on the bed while she cried and felt sorry for herself. I didn't tell her to stop crying. I also didn't mention that she was feeling sorry for herself. These are important things to do and to experience when they come up. So, I agreed with her. It isn't fair that she has a cast and has leukemia. It isn't but then again, what is? I didn't ask her that. Instead, I told her, "Aria, you are absolutely right. It isn't fair that you have leukemia and have to be stuck wearing that pretty cast!" She looked at me tearfully and gave a little sob. I continued, “But tell me, what do you want to do about it?" She stopped crying instantly and immediately gave me a, "huh?" She looked right into my eyes, searching. I shrugged my shoulders and said, "Yeah. I don't understand it but sometimes lots of things happen in life that just aren't fair. They aren't. So..... what should we do?" She was thoughtful and said with her old soul kind of seriousness, "I just don't know Mama." I told her, "I have an idea." Her eyes were wide glued to mine. "How about we just take it as it comes like warriors." Her eyes brightened and she squealed, "I'm a warrior!" to which I replied, "I know. You're an amazing warrior." "Hey Mama, "she said, "you're a warrior too!" I smiled and giggled and told her, "I am a warrior and I've become a smarter warrior because of you!" She groaned and giggled and flopped herself on the pillows, "Oh Mama! You're a poop!"
Last night Aria tested herself and her cast. She's been playing on the floor a little and scooting around some but hasn't wanted to venture very far. Last night with Doc around I don't know what happened but suddenly Aria was inspired. She was scooting all over the floor. She lifted herself onto the couch and figured out how to crawl down. She was playful and energetic and couldn't wait to show me how quick she could scamper dragging her casted leg. She asked me in a sort of 'under the table' kind of way, "Hey Mama, you think I could try going down the stairs?" I told her, "Absolutely! Come on!" She scooted to the stairs and a little fright came upon her. I sat down with her and said, "Come on, honey. I'll show you how. Just follow me!" Before I knew it she was right behind me coming down the stairs. This morning she has been up and down the stairs herself and scooting all over!
I tell you, I am convinced this is Doc's doing. He enables her to feel safe pushing the boundaries. Aria has no interest in trying these kinds of things with me. I'm the person she wants to hunker down with. Doc is someone she wants to play with and move with. She has a different sense of safety and security with him. I think this is extraordinary. I was thrilled to see this change in her. She's feeling more and more confident. I'm certain that if her counts are higher than 830 next Tuesday when we go in for labs that she'll be able to go to school for a few days. She's thrilled about showing off her cast to her friends. On June 3rd, we return to the orthopedic clinic and have her leg examined to see if it has healed enough for the boot cast and then she'll be practically as good as new!
All of us are experiencing a moment here of true wellness! We had a wonderful weekend at the lake. It was a short get away but it was a get away. Doc and I were able to have lengthy conversations. We were able to play on the beach. We all felt increasingly confident and ready to take ourselves out of our comfort zones a little. It was just lovely!
I feel like I have a wonderful stride going. I'm healthy. I'm strong. I'm vibrant and resilient. I thought I was on a survivor's path but I realize now that I'm not. I'm making one and it is the way of a warrior. ~j
Aria's May 2009 clinic appointment
May 14, 2009
Subject: Aria’s May clinic appointment
May 11 2009, found us back in clinic for a lab check, chemo and an examination with Dr. Trobaugh. It was 8 30 in the morning and already the clinic was busy with a mixture of people I know well and those I don't know at all. My heart is heavy knowing families every single day all over the world are touched by the brutal hand of cancer.
Aria found comfort sitting in a wheelchair that gave her a royal air. Regrettably, she behaved like an entitled little princess, which we promptly addressed and redirected. People couldn't help fawning over her, catering to her every whim and need. It was something about the size of her purple cast contrasted with the size of her wheeled throne that made her appear especially small. She was in great spirits despite the fact that she couldn't do much. Krista brought Aria puppets, a lion and a turtle and they played with those for what seemed like a long time. Krista was so good to play with Aria and didn't skip a beat even when the play was reduced to potty and puke jokes.
Aria (holding the lion): "Oh my! gerrrp blecht!@ urp! I just puked on you!"
Krista (holding the turtle): "What?! You just puked on me?! No way! Not on my shell! I just polished it!
Aria: "That's too bad! Ooops! I just pooped!"
Krista: "Eeew! Gross. Someone get me a towel and quick! I'm ducking in my shell and getting away from you!"
Aria: "Oh no you don't! ppssssss!! I just peed on you!!"
Krista: "EEEEEwwww! Somebody help me!!"
I kid you not, this kind of banter went on for 20 minutes or more. Aria never tired of herself and what she considered to be the most hilarious jokes of all time. Krista never wavered and acted as if she was hearing jokes from a pro. She's such a gem.
Aria's port was accessed and her blood flowed with ease and then we began the exhausting process of waiting. I seem to be in a place on this journey where I have a greater capacity for other peoples' stories. I'm still trying to figure out what's behind my curiosity always making certain that it comes from a genuine place that is hopefully compassionate and mindful. I don't want my curiosity to become a barometer that seeks others as means to compare how we're doing.
The hand of fate that touches us all in one way or another never ceases to amaze me. What's even more incredible, however, is the resiliency of those dealing with their lot. Just when I think I hear a story that ought to reduce someone to nothing but the tears they can produce, there's always another side. There's this reserve of strength and endurance that may have appeared hidden or unknown altogether that people uncover and begin utilizing instantly and with little thought. The automatic nature of this survival tactic is within us all. It is a simple matter of trusting and being. I'm not talking about trusting a higher power that exists outside of ourselves because I don't believe that's where It resides. Trust, in this regard is nothing more than a matter of reminding yourself, "I can do this. I can do it because I must." There's nothing else that needs to be considered complicating the matter. In some ways it is the easiest thing to do. You have to do something because Life has reminded you that control is not something within your grasp and so you cope by simply doing what you must.
For instance, when Aria broke her leg, my anxiety immediately kicked in and I was concerned about navigating school, clinic and the grocery store, just to name 3 places we go on a regular basis. I don't think my reaction or my concern was exceptionally anxious. It was a daunting task and I was nervous and intimidated by what I didn't yet understand but this is where time is such a gentle healer if one only allows it to works its magic. Aria has not been back to school since her injury and this has been fine. She hasn't been up to it and has needed every moment of lying in front of the television to rest and heal. This week she had her chemotherapy, which really did a number on her stamina. Keeping her home from school for another week was easy. Her teacher has been terrific to send home activities and things to keep her stimulated, none of which we've done but will when Aria can sit at the table and do a project for more than 5 minutes. She may attend school next week for a few days. We'll take it as it comes and so what we have to.
Clinic has been easy to manage especially since Krista told me to call her and she'd meet us with a wheelchair ready to go...problem solved.
The grocery store was another matter. You may recall that I mentioned having to run and grab a gallon of milk the other day and I was absolutely dreading it. I kept imagining the cart like some kind of unfinished well that I would slowly have to descend Aria into knowing there’s no rope in which to retrieve her. I kept imagining my back bending like a young sapling threatening to snap in an instant. I imagined her sitting in the cart complaining the entire time exuding whiney energy that would infect and influence Rianna. None of these images were inviting so it isn't a wonder I was avoiding the store.
Naturally people volunteered to help right and left as did Doc who quickly came to my aid and took care of everything. That was last week and yesterday (May 13, 2009) I took all 3 kids to the grocery store and we had a ball. Aria was in super spirits, creating an atmosphere of adventure and fun. The cart was not a deep dark well and putting her in it was simple and easy. I should credit the fact that I've been carrying her for 2 weeks now up and down 2 flights of stairs totaling 32 steps in all, so I'm physically stronger and more confident. Although, Aria is beginning to make general complaints about her cast and being confined, "I hate this cast! This cast is No Fair!" she isn't losing herself in a pit of inflexible self-pity and this has made this particular detour that much more bearable. I should also mention that I was in a rather celebratory mood. Aria is already half-way done with this full leg cast and these 2 weeks have flown. I have such a sense of hope and this is also a strengthening force.
But despite my jubilant mood, the clinic this past Monday was sober as it is many times. There was a little 5 year old girl who I'm getting to know fairly well. We see her and her mom regularly and although I remember her diagnosis, which was a neuroblastoma that is in full remission, I couldn't remember why she is now neurologically impaired. She has limited speech and her motor skills are such that she appears as if she has cerebral palsy. She has mild tremors and a drunken kind of gait. She is undeterred, however, fearless and social. She and her mother are probably two of the sweetest people I have ever had the privilege of meeting. Her mom told me that during her treatment for the tumor, she had a rare reaction to the chemotherapy that basically left her neurologically impaired. When it first happened 2 years ago, she looked as if she had Parkinson's and her tremors were very difficult to watch. She lost her speech and wasn't able to walk or sit or feed herself. The gains she has made in the last few years are incredible and reflect an innate tenacity as well as an unconditional devotion from her mother. Why they are still coming to clinic since her cancer has been cured was puzzling. It turns out that when she is given low dose chemo that keeps her immune system suppressed, her tremors disappear and she functions better. The problem is that she's immuno-suppressed and her risk for toxicity and secondary cancer as a result of constant chemotherapy is high. There is no end in sight for her treatment. They come to clinic every month or so and will until.......I don't know how to wrap my head around that. They are expecting a baby boy in another month, which shows me that life goes on despite hardship. This is their lot and they are dealing with it with such grace, integrity and genuine interest in the well being of others. I enjoy being in their company immensely. We have this sense of real community. Mom can't run around chasing after her daughter like she used to since she is 8 months pregnant so everyone helps. Her daughter crawled into my lap and we rocked in a rocking chair while she snacked on oreos. She even cuddled into Doc for a little while, which was so sweet and tender. She reminds us to be gentle and I'm grateful for her gift.
After about 2 hours of waiting another family appeared in the playroom; a mother, a grandmother and 2 little girls who were, I'm guessing, 5 and almost 3 years old. All four of them were like various sized angels walking around with a sort of hallowed mysticism about them. They were playful and joyful and I was certain this was probably the end of treatment for them. The little girls were full of energy and looked terrific. I was so happy to see them and couldn't wait to find out about them. I was sitting in a rocking chair beside the grandmother and the mother who was holding the younger girl when I noticed that her little eyes were shaded on the inside of her nose as if she'd painted purple streaks beginning at the top of her nose to just beneath her eyes. It was an odd kind of black eye. Then I saw her arm and it was speckled with red dots and brown-green bruising. Then I noticed her hand and her little knuckles were brown as if a mini chocolate chip had melted perfectly upon each knuckle perch. I was so tempted to blurt out, "What on earth is going on with this little sweetheart?" Instead, I took a breath and gently said something like, "I haven't seen you folks before. I'm Julia and this is my family. We're here for treatment for my daughter Aria who has leukemia. What brings you here?" The grandmother beamed the most brilliant smile and told me her name. She told me that just last week her little almost 3 year old granddaughter was admitted for a rare blood disorder where she's not producing platelets, which is why she is covered head to toe in bruises. They basically only touch her skin and a bruise is left reminding them that something is very wrong. They were told that it would be easier to treat her if she 'just had leukemia.' When I heard her say that, an explosion went off in my mind. "It would be BETTER if she had leukemia?" I took a deep breath and looked right into her eyes and said, "I have to take a moment and process that." I closed my eyes and breathed while she watched me. Her smile faded slightly. I told her I was sorry, so sorry that leukemia would be better than what they face now since I know intimately how difficult leukemia is. I asked her, "Are you ok?" It is so tempting at this stage to deflect the seeming simplicity of this question with some kind bravado that rings, "Oh sure! Yeah! We're fine. We'll get through this. She's a tough little cookie. No, yeah, we're good." It isn't a lie to say this but it is a layer of truth that acts as a protective shield to the deeper truth that lies just beneath. The real truth that screams, "I'm freaking out! I don't want to appear weak! I can't cry in front of these kids! I don't know what to do! I don't understand what's happening! I've never really had to be vulnerable before and I'm so uncomfortable with it!! I have to be brave and being brave means being happy and positive and smiley all the time! Right? Cause if I cry and show I'm scared, then I'm being negative and not courageous! Right?!" I know this internal mental rant very well.
Her initial reaction to my question was the predictable, "Oh yeah, we're ok." but then she said, " We just don't know." and her eyes looked distant and her voice became a whisper. They don't know. Her grand-daughter is doing well and they are committed to figuring out what to do but the unknowns they face are enormous. I wanted to shoulder some of their burden but I can't. I could only tell them how long we'd been coming and how well we've been treated. I told them how confident I was in the care Aria was receiving. I think she appreciated it and felt a degree of comfort. We ended our conversation with the classic shoulder shrug and head shake, "What-are-ya-gonna-do?" We left them at that and went to meet with Dr. Trobaugh.
Dr. Trobaugh took one look Aria in that wheelchair with her big purple cast and she was immediately a mother and not a doctor. She scrunched up her face and pouted, "Oh, dear! Bummer." I thought I heard a little boo-hoo but I can't be certain. It was wonderful seeing her relate to Aria in this way. Quickly, she transformed back into her doctor self and reassured us that she didn't think Aria’s break had anything to do with leukemia nor did she think the healing process would be hindered in any way. Once again I was completely taken by her confidence. She then told us that Aria's counts have significantly dropped to 830! This came as a bit of shock I must say. Just 2 weeks ago Aria's ANC was 2961 and 2 weeks before that we had increased her chemo just slightly because her ANC was 1911. Dr. Trobaugh didn't want to increase the chemo when her ANC was 2961 because Aria was dealing with the sniffles and a cold sore and wanted to keep her immune system up a little to fight whatever virus was threatening to take charge. An ANC of 830 is a significant drop and somewhat worrisome. Remember that an ANC of 500 or less gets Aria a hospital stay with no fresh fruit, vegetables, flowers or outdoor activities. Dr. Trobaugh wasn't alarmed. She considered the trauma of a broken leg and her body in healing over-drive definitely a contributing factor. The current chemo level could be adding to the problem. But the real concern is that she doesn't want Aria's counts to bottom out so we've backed off on her chemo a little and we'll recheck her counts in 2 weeks. Hopefully in the interim, Aria can avoid getting sick with such a low ANC. She really shouldn't go to school with an ANC below 1000 so I don't know if I'll be sending her to school next week. We'll just have to wait and see how she feels.
Aria is back on her steroids and if you're groaning reading that just consider for a moment that she's back on steroids AND she's in a full length cast that is beginning to itch. I have to laugh. She's actually doing really well. She has only 4 more doses to go and I'm really impressed with this round of steroid treatment. She's not as starving as she normally is and she isn't incessantly begging me for junk food or sweets. She's also not as moody as she has been in the past and this is enormous for me. She's getting a lot more rest and this seems to be helping stabilize her mood. Like I said, we still have 2 more days and a lot can happen in that time. I made sure to buy extra boxes of noodles just in case!
We're going to Priest Lake in Idaho this weekend for an over-nighter. This will be my first time away from home over-night since that infamous and horrible weekend trip to Seattle more than a year ago. I can't tell you how excited we are. We've rented a cabin on the lake and it ought to be really fun hanging out on the beach, having a campfire and just enjoying the views. Aria won't be able to do much but we'll try to keep her entertained as best we can. It will be nice just to get away for a short time.
This recent detour has simplified our lives in several respects and I'm learning to perfect the art of flexibility and acceptance. It isn't always easy and what's makes it infinitely more difficult is intellectual rigidity. "I - want - what - I - want - when - I - want - it" mentality isn't conducive to this path and I've unfortunately had to learn that the hard way once in a while. I am learning and even though my path seems narrower my balance is getting better. I'm finding a new stride. I seem to have to a new walking staff, although I can't yet describe what it looks like. My backpack feels lighter. Could that be possible? I'm in the sunshine surrounded by a meadow on this path but I can see trees ahead. Some shade? Some respite? I don't know. I don't care. It is what it is and whatever it is, whatever comes, I'll be fine and you will too. ~j
Subject: Aria’s May clinic appointment
May 11 2009, found us back in clinic for a lab check, chemo and an examination with Dr. Trobaugh. It was 8 30 in the morning and already the clinic was busy with a mixture of people I know well and those I don't know at all. My heart is heavy knowing families every single day all over the world are touched by the brutal hand of cancer.
Aria found comfort sitting in a wheelchair that gave her a royal air. Regrettably, she behaved like an entitled little princess, which we promptly addressed and redirected. People couldn't help fawning over her, catering to her every whim and need. It was something about the size of her purple cast contrasted with the size of her wheeled throne that made her appear especially small. She was in great spirits despite the fact that she couldn't do much. Krista brought Aria puppets, a lion and a turtle and they played with those for what seemed like a long time. Krista was so good to play with Aria and didn't skip a beat even when the play was reduced to potty and puke jokes.
Aria (holding the lion): "Oh my! gerrrp blecht!@ urp! I just puked on you!"
Krista (holding the turtle): "What?! You just puked on me?! No way! Not on my shell! I just polished it!
Aria: "That's too bad! Ooops! I just pooped!"
Krista: "Eeew! Gross. Someone get me a towel and quick! I'm ducking in my shell and getting away from you!"
Aria: "Oh no you don't! ppssssss!! I just peed on you!!"
Krista: "EEEEEwwww! Somebody help me!!"
I kid you not, this kind of banter went on for 20 minutes or more. Aria never tired of herself and what she considered to be the most hilarious jokes of all time. Krista never wavered and acted as if she was hearing jokes from a pro. She's such a gem.
Aria's port was accessed and her blood flowed with ease and then we began the exhausting process of waiting. I seem to be in a place on this journey where I have a greater capacity for other peoples' stories. I'm still trying to figure out what's behind my curiosity always making certain that it comes from a genuine place that is hopefully compassionate and mindful. I don't want my curiosity to become a barometer that seeks others as means to compare how we're doing.
The hand of fate that touches us all in one way or another never ceases to amaze me. What's even more incredible, however, is the resiliency of those dealing with their lot. Just when I think I hear a story that ought to reduce someone to nothing but the tears they can produce, there's always another side. There's this reserve of strength and endurance that may have appeared hidden or unknown altogether that people uncover and begin utilizing instantly and with little thought. The automatic nature of this survival tactic is within us all. It is a simple matter of trusting and being. I'm not talking about trusting a higher power that exists outside of ourselves because I don't believe that's where It resides. Trust, in this regard is nothing more than a matter of reminding yourself, "I can do this. I can do it because I must." There's nothing else that needs to be considered complicating the matter. In some ways it is the easiest thing to do. You have to do something because Life has reminded you that control is not something within your grasp and so you cope by simply doing what you must.
For instance, when Aria broke her leg, my anxiety immediately kicked in and I was concerned about navigating school, clinic and the grocery store, just to name 3 places we go on a regular basis. I don't think my reaction or my concern was exceptionally anxious. It was a daunting task and I was nervous and intimidated by what I didn't yet understand but this is where time is such a gentle healer if one only allows it to works its magic. Aria has not been back to school since her injury and this has been fine. She hasn't been up to it and has needed every moment of lying in front of the television to rest and heal. This week she had her chemotherapy, which really did a number on her stamina. Keeping her home from school for another week was easy. Her teacher has been terrific to send home activities and things to keep her stimulated, none of which we've done but will when Aria can sit at the table and do a project for more than 5 minutes. She may attend school next week for a few days. We'll take it as it comes and so what we have to.
Clinic has been easy to manage especially since Krista told me to call her and she'd meet us with a wheelchair ready to go...problem solved.
The grocery store was another matter. You may recall that I mentioned having to run and grab a gallon of milk the other day and I was absolutely dreading it. I kept imagining the cart like some kind of unfinished well that I would slowly have to descend Aria into knowing there’s no rope in which to retrieve her. I kept imagining my back bending like a young sapling threatening to snap in an instant. I imagined her sitting in the cart complaining the entire time exuding whiney energy that would infect and influence Rianna. None of these images were inviting so it isn't a wonder I was avoiding the store.
Naturally people volunteered to help right and left as did Doc who quickly came to my aid and took care of everything. That was last week and yesterday (May 13, 2009) I took all 3 kids to the grocery store and we had a ball. Aria was in super spirits, creating an atmosphere of adventure and fun. The cart was not a deep dark well and putting her in it was simple and easy. I should credit the fact that I've been carrying her for 2 weeks now up and down 2 flights of stairs totaling 32 steps in all, so I'm physically stronger and more confident. Although, Aria is beginning to make general complaints about her cast and being confined, "I hate this cast! This cast is No Fair!" she isn't losing herself in a pit of inflexible self-pity and this has made this particular detour that much more bearable. I should also mention that I was in a rather celebratory mood. Aria is already half-way done with this full leg cast and these 2 weeks have flown. I have such a sense of hope and this is also a strengthening force.
But despite my jubilant mood, the clinic this past Monday was sober as it is many times. There was a little 5 year old girl who I'm getting to know fairly well. We see her and her mom regularly and although I remember her diagnosis, which was a neuroblastoma that is in full remission, I couldn't remember why she is now neurologically impaired. She has limited speech and her motor skills are such that she appears as if she has cerebral palsy. She has mild tremors and a drunken kind of gait. She is undeterred, however, fearless and social. She and her mother are probably two of the sweetest people I have ever had the privilege of meeting. Her mom told me that during her treatment for the tumor, she had a rare reaction to the chemotherapy that basically left her neurologically impaired. When it first happened 2 years ago, she looked as if she had Parkinson's and her tremors were very difficult to watch. She lost her speech and wasn't able to walk or sit or feed herself. The gains she has made in the last few years are incredible and reflect an innate tenacity as well as an unconditional devotion from her mother. Why they are still coming to clinic since her cancer has been cured was puzzling. It turns out that when she is given low dose chemo that keeps her immune system suppressed, her tremors disappear and she functions better. The problem is that she's immuno-suppressed and her risk for toxicity and secondary cancer as a result of constant chemotherapy is high. There is no end in sight for her treatment. They come to clinic every month or so and will until.......I don't know how to wrap my head around that. They are expecting a baby boy in another month, which shows me that life goes on despite hardship. This is their lot and they are dealing with it with such grace, integrity and genuine interest in the well being of others. I enjoy being in their company immensely. We have this sense of real community. Mom can't run around chasing after her daughter like she used to since she is 8 months pregnant so everyone helps. Her daughter crawled into my lap and we rocked in a rocking chair while she snacked on oreos. She even cuddled into Doc for a little while, which was so sweet and tender. She reminds us to be gentle and I'm grateful for her gift.
After about 2 hours of waiting another family appeared in the playroom; a mother, a grandmother and 2 little girls who were, I'm guessing, 5 and almost 3 years old. All four of them were like various sized angels walking around with a sort of hallowed mysticism about them. They were playful and joyful and I was certain this was probably the end of treatment for them. The little girls were full of energy and looked terrific. I was so happy to see them and couldn't wait to find out about them. I was sitting in a rocking chair beside the grandmother and the mother who was holding the younger girl when I noticed that her little eyes were shaded on the inside of her nose as if she'd painted purple streaks beginning at the top of her nose to just beneath her eyes. It was an odd kind of black eye. Then I saw her arm and it was speckled with red dots and brown-green bruising. Then I noticed her hand and her little knuckles were brown as if a mini chocolate chip had melted perfectly upon each knuckle perch. I was so tempted to blurt out, "What on earth is going on with this little sweetheart?" Instead, I took a breath and gently said something like, "I haven't seen you folks before. I'm Julia and this is my family. We're here for treatment for my daughter Aria who has leukemia. What brings you here?" The grandmother beamed the most brilliant smile and told me her name. She told me that just last week her little almost 3 year old granddaughter was admitted for a rare blood disorder where she's not producing platelets, which is why she is covered head to toe in bruises. They basically only touch her skin and a bruise is left reminding them that something is very wrong. They were told that it would be easier to treat her if she 'just had leukemia.' When I heard her say that, an explosion went off in my mind. "It would be BETTER if she had leukemia?" I took a deep breath and looked right into her eyes and said, "I have to take a moment and process that." I closed my eyes and breathed while she watched me. Her smile faded slightly. I told her I was sorry, so sorry that leukemia would be better than what they face now since I know intimately how difficult leukemia is. I asked her, "Are you ok?" It is so tempting at this stage to deflect the seeming simplicity of this question with some kind bravado that rings, "Oh sure! Yeah! We're fine. We'll get through this. She's a tough little cookie. No, yeah, we're good." It isn't a lie to say this but it is a layer of truth that acts as a protective shield to the deeper truth that lies just beneath. The real truth that screams, "I'm freaking out! I don't want to appear weak! I can't cry in front of these kids! I don't know what to do! I don't understand what's happening! I've never really had to be vulnerable before and I'm so uncomfortable with it!! I have to be brave and being brave means being happy and positive and smiley all the time! Right? Cause if I cry and show I'm scared, then I'm being negative and not courageous! Right?!" I know this internal mental rant very well.
Her initial reaction to my question was the predictable, "Oh yeah, we're ok." but then she said, " We just don't know." and her eyes looked distant and her voice became a whisper. They don't know. Her grand-daughter is doing well and they are committed to figuring out what to do but the unknowns they face are enormous. I wanted to shoulder some of their burden but I can't. I could only tell them how long we'd been coming and how well we've been treated. I told them how confident I was in the care Aria was receiving. I think she appreciated it and felt a degree of comfort. We ended our conversation with the classic shoulder shrug and head shake, "What-are-ya-gonna-do?" We left them at that and went to meet with Dr. Trobaugh.
Dr. Trobaugh took one look Aria in that wheelchair with her big purple cast and she was immediately a mother and not a doctor. She scrunched up her face and pouted, "Oh, dear! Bummer." I thought I heard a little boo-hoo but I can't be certain. It was wonderful seeing her relate to Aria in this way. Quickly, she transformed back into her doctor self and reassured us that she didn't think Aria’s break had anything to do with leukemia nor did she think the healing process would be hindered in any way. Once again I was completely taken by her confidence. She then told us that Aria's counts have significantly dropped to 830! This came as a bit of shock I must say. Just 2 weeks ago Aria's ANC was 2961 and 2 weeks before that we had increased her chemo just slightly because her ANC was 1911. Dr. Trobaugh didn't want to increase the chemo when her ANC was 2961 because Aria was dealing with the sniffles and a cold sore and wanted to keep her immune system up a little to fight whatever virus was threatening to take charge. An ANC of 830 is a significant drop and somewhat worrisome. Remember that an ANC of 500 or less gets Aria a hospital stay with no fresh fruit, vegetables, flowers or outdoor activities. Dr. Trobaugh wasn't alarmed. She considered the trauma of a broken leg and her body in healing over-drive definitely a contributing factor. The current chemo level could be adding to the problem. But the real concern is that she doesn't want Aria's counts to bottom out so we've backed off on her chemo a little and we'll recheck her counts in 2 weeks. Hopefully in the interim, Aria can avoid getting sick with such a low ANC. She really shouldn't go to school with an ANC below 1000 so I don't know if I'll be sending her to school next week. We'll just have to wait and see how she feels.
Aria is back on her steroids and if you're groaning reading that just consider for a moment that she's back on steroids AND she's in a full length cast that is beginning to itch. I have to laugh. She's actually doing really well. She has only 4 more doses to go and I'm really impressed with this round of steroid treatment. She's not as starving as she normally is and she isn't incessantly begging me for junk food or sweets. She's also not as moody as she has been in the past and this is enormous for me. She's getting a lot more rest and this seems to be helping stabilize her mood. Like I said, we still have 2 more days and a lot can happen in that time. I made sure to buy extra boxes of noodles just in case!
We're going to Priest Lake in Idaho this weekend for an over-nighter. This will be my first time away from home over-night since that infamous and horrible weekend trip to Seattle more than a year ago. I can't tell you how excited we are. We've rented a cabin on the lake and it ought to be really fun hanging out on the beach, having a campfire and just enjoying the views. Aria won't be able to do much but we'll try to keep her entertained as best we can. It will be nice just to get away for a short time.
This recent detour has simplified our lives in several respects and I'm learning to perfect the art of flexibility and acceptance. It isn't always easy and what's makes it infinitely more difficult is intellectual rigidity. "I - want - what - I - want - when - I - want - it" mentality isn't conducive to this path and I've unfortunately had to learn that the hard way once in a while. I am learning and even though my path seems narrower my balance is getting better. I'm finding a new stride. I seem to have to a new walking staff, although I can't yet describe what it looks like. My backpack feels lighter. Could that be possible? I'm in the sunshine surrounded by a meadow on this path but I can see trees ahead. Some shade? Some respite? I don't know. I don't care. It is what it is and whatever it is, whatever comes, I'll be fine and you will too. ~j
Aria's Broken leg!!!
Earlier in the morning I had sent an email titled "A Weighted Spirit" and it basically detailed the intensity of this journey. It was a heavy email and although I was feeling heavy when I wrote it, I felt lighter and liberated after having sent it. Later in the evening, we went to Reo's baseball game and Life threw us a curve ball. Aria broke her leg! What follows is a series of emails I sent detailing that...This is life..
April 29, 2009
Subject: Aria is on her way to the ER
We were at Reo's baseball game this evening at a wonderful park. She was playing on one of those huge jungle gym type things and twisted her leg going down a slide. We can't tell if she's broken her leg or not. She wouldn't let us get near her to look. The last time she was in this kind of pain was when she was first diagnosed. At the park this evening she screamed, "I'm injured! I'm injured!" Doc carried her to the car, while I took Reo out of his game. Doc dropped Reo, Rianna and I off at home before taking Aria to the ER. Reo was devastated he couldn't go and be with her while she was having x-rays. He came into the house in tears saying, "Mama, it's all my fault! Aria wouldn't have gotten injured if I didn't make her go. It's my fault and you won't let me be with her." I had to sit with that one a moment so I wouldn't burst into tears. I explained to him that it wasn't his fault and that it was just an accident. I reassured him that she'd be fine. He's truly shaken up though. Our hearts our broken and they've already been broken so this is that much more tender....Keep us in the light. ~j
April 29, 2009
Subject: Aria ER update
Doc called about 2 minutes ago. They suspect that Aria has broken her leg. They were getting ready to access her and give her morphine before taking her down to x-ray. I'm completely....I don't know what the word is....nothing seems to fit. I'm so sad and horrified that I can't cry...yet.....will let you know more soon. ~j
April 29, 2009
Subject: Aria broke her leg
Doc called a few moments ago and Aria has suffered a classic mid fracture of her tibia. The fracture is complete but well aligned and they were getting ready to put a cast on her when Doc had to hang up. Will let you know more when I know more. ~j
April 29, 2009
Subject: Final Aria update for this evening
Doc just called. Aria is resting comfortably. They have put on a split like cast to allow room for some swelling. I'm to expect a phone call tomorrow morning to arrange to take her back on Friday for a full cast. Doc said that an orthopedic surgeon was consulted. She said that Aria's fracture looks classic and well aligned that it ought to heal nicely without the need for any surgical intervention. What a relief.
I have to tell you, I'm about to lose my cool here. I am so sad about what happened that I have no idea what to do or where to put the emotions I'm feeling. I was cleaning toilets when suddenly this thought entered my mind, "Oh my God, what if she got a broken leg because there's some kind of lesion. Maybe she has metastatic cancer and this broken leg is revealing that." Of course I could barely stand the thought and had to try to put it out of my mind but it was there. So when Doc called just now I asked, "Hey Doc, did Aria break her leg because she has bone cancer?" Doc paused for a moment and said, "Oh no honey. The ER doctor and I both looked at the films. We were looking for that very thing. There was no pathological sight anywhere around her fracture. The orthopedic surgeon also said she didn't see any pathology and in fact said that Aria's bone health looks really good. The ER doctor apparently went on to say that they are seeing more fractures just like Aria's because these new slides have connecting plastic pieces where the kids get their sneakers caught going down the slide and their legs bend in weird breaky kind of ways! He also told Doc, "I'm such a mean dad. I don't let my kids bounce on trampolines and I don't let them play on playground sets!" Doc said he laughed and told him that as we were driving home I had mentioned, "I hate playground sets!"
Aria and Doc are coming home in a little while. I have no idea how the night is going to play out or the next couple of days. She isn't allowed to bear any weight at all so I'll just have to figure that out as we go. What a total bummer. I'm so sorry for her...Please keep her close and in the light of yourselves! ~j
May 2, 2009
Subject: Aria update!
Good Morning everyone!
I just wanted to tell you that everyday is better and better.
Thursday was the worst day I can remember in a long time. Aria was in so much pain and the temporary cast was just plain uncomfortable. This on top of the kids sensing my stress and my constant nips and barks, "Rianna! Honey...don't..stop.don't..honey, please don't go near Aria's leg. No, please, don't climb near her. Honey! No. Please. Don't-don't-don't.Just come over here!" or "Reo, sweetie, please be quiet. No don't shake those star wars things at Aria. Please, honey, get away from her leg. Hon, please stop! don't!" It felt like I was doing that all day long even though I know I wasn't. I understand fully that I was completely anxious about anticipating something happening and my words were nothing more than the manifestation of that stress and worry. I also understand that I was simply being protective. I was telling one of my Goddesses last night that if I had a more constructive sense of internal peace that I would behave more presently and not out of fear of what might happen or of what could happen. Instead, I would be entirely focused on what is happening. In this instance, what was happening was that Rianna and Reo were simply being themselves. In Rianna's case, she was curious, concerned and playful. I really doubt she would have been a spazz, suddenly feeling compelled to jump on Aria's leg like some kind of trampoline. If I had been more in touch at the time, I would have invited her to look at Aria and I would have gently explained to her what was happening. Instead, my explanations were short, quick, defensive maneuvers that weren't really all that helpful. Don't worry. I'm not being too hard on myself. I'm simply observing my behavior and my thoughts so that as Aria continues to heal or should the next time this kind of thing happen, I can be more aware and perhaps more awake!
Aria's pain was hard to manage on Thursday. We were using oxycodone that was left-over from last year. The dosing we had was probably too low because it was based on her weight at that time. She has since gained 10 pounds but we were feeling conservative anyway. Her pain medication helped for about 2 1/2 - 3 hours and that last hour before we could give her more was pretty miserable. At 4 am Friday morning, Aria was shrieking in pain. Her eyes were as wide and bewildered as I've ever seen them. I don't think she was able to recognize or really see anything. She was shaking her head and writhing, pounding her hands beside her body. Naturally we gave her more pain medicine but it was taking longer to kick in. She was moaning and screaming, "ow-ow-ow-ow-ow-ow!" Oh my God. It was the most wretched horrible thing. A true nightmare was unfolding before my very eyes. Finally, Doc couldn't stand it anymore and decided that she needed another dose of pain medicine, "Julie, I feel comfortable giving her another 2.5 ml. She is just not doing well." At this point, I didn't care. I just wanted her pain to go away! He gave her another dose of the medicine and within minutes she was calm. Mind you, minutes before, she was screaming and begging for help, crying but there were no tears. When she relaxed and her breathing began to stabilize, I noticed a single tear fall from her eye as I lay next to her. This is when I finally had my own cry...Doc and I stayed awake listening to her breathe making sure she was ok. Finally as the sun was rising Doc and I fell asleep for a short while.
We woke up early and got her ready to go see the orthopedic surgeon to get her permanent cast put on and to learn about all the details of her care. She was in wonderful spirits and we gave her another full dose (5ml) of her medicine because we knew her leg was going to be manipulated and we wanted to minimize her pain and discomfort. We kept Reo out of school. He was convinced that only he was going to be able to explain to the doctor what had happened. It was adorable. He told everyone he encountered with this puppy dog look and a pleading sort of tone, "Our poor Aria got injured at Medical Lake WaterFront park on the slide. She broke her leg on one of her bones!!!" It made me laugh and smile. He is so protective of her.
We arrived at the orthopedic surgeon's clinic and I filled out 6 pages of paperwork. It was an incredible experience to list all of Aria's medication and to check several boxes of 'things that apply.' I didn't feel devastated this time. I felt accepting and perfectly grounded. I'm healing.
As I was filling out questionnaires, Doc was chasing Rianna up and down the hallway. She was giggling and screaming with delight much to everyone's cheer. People were in such good spirits. Aria was sitting in a chair with her leg propped up perfectly at ease. When we were brought to an examination room, Reo introduced everyone and began telling the story of Aria's dramatic leg injury. It really was so sweet! The surgeon came in and talked us about the next 6 - 8 weeks that Aria will be in a cast. For the first month she'll wear the full length leg cast she's in now. Her toes are exposed and about 3 or 4 inches of her thigh below her hip. The rest of her leg is immobilized in a gorgeous bold purple cast. It is wonderful! We talked about having a gortex water-proof cast put on but the surgeon said that they don't typically put that kind of casting material on legs. The gortex itself doesn't breathe well and is unforgiving on the skin. Furthermore, it is much heavier than the regular cast material and since Aria's cast is already heavy, she doesn't add to that weight. However, after a month of non-bearing weight in this cast, if the fracture is healing well, then they may change her to a cast below her knee that will enable her to walk a little more and we may be able to try the waterproof material. We'll cross that bridge when we get there. The surgeon, Dr. Smith, told us that in about 2 weeks Aria will want to start moving around and walking a little. She told us that many kids hobble around like cartoon characters in these huge casts and are fine. She'd prefer we not let her walk around, but sometimes there's just no stopping kids. Aria is accustomed to laying low, so I really don't think this is going to be too much of an issue. But we'll cross that bridge when we get there too. The surgeon was optimistic and didn't think that Aria's cancer and subsequent chemotherapy should have any negative impact on her bone healing but isn't entirely certain. It may take longer but we'll just have to see.
Aria slept most of day yesterday (friday). She was comfortable and never once complained of serious pain. We changed her pain medication to tylenol with codeine and that helped a great deal. I noticed that when she was sleeping she twitched occasionally and unlike Thursday in the temporary cast, she didn't wake up screaming in pain. I should mention that the reason why she wasn't casted straight away was to allow for her leg and foot to swell. As it is, her cast will appear to be loose in the morning and tighter at night. It will get tighter when she's on steroids because she tends to swell then. This is all normal fluctuation and variation. In any case, it was so wonderful to see her sleep through her twitches! She slept last night 8 hours straight without needing pain medication. Around 4 am, Doc woke her up to go ahead and give her some and take her to the potty. She slept peacefully for the next few hours.
This morning, she's been playful and full of spirit. I brought one of the kittens to her to hold, which she did for a long long time. That was very healing and soothing for her.
I'm keeping her out of school for at least this next week. I don't know about the rest of the school year. She attends 2 1/2 hours a day and this is a lot of carrying her to and from along with keeping track of Rianna. Right now, in this moment, that seems like too much for me to consider. But who knows how I'll feel in a couple of weeks. I may request a wheelchair and let her go for a few days. We'll see. I have to learn about this cast and maneuvering her in and out of my car and her car seat. I have to increase my level of confidence before I venture out too far. The way things are going now, I am very optimistic!
I can't thank you enough for all your encouragement and thoughtful messages and prayers. It helps so much. This was a huge blow to come across our path. Initially it was so shocking that it seemed almost unmanageable but the truth is, it is entirely manageable despite being a complete tragic shock. I could let it block out the light and the joy of this journey and I did momentarily but I realize that it isn't that powerful. I realize I am more powerful than it. It will take some time for me to chip away at it in order for me to resume my journey as I was a few days ago, but I will and I welcome all the new things I'm about to learn. This is another opportunity for me to pause, pay attention and reach the potential for which I was designed. It is what is. I am who I am. I am present. I am able. I carry on. ~j
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