Thursday, June 11, 2009

A Bit of the Present (June 2009)

This is an email I wrote this morning and just sent.

June11, 2009
Aria's June Clinic Visit

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. I has been with me since weighing heavier and heavier. However, I'm free of that burden now 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 just 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, but as it turns out her graduation from preschool 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 rather 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. "Duh! 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 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 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 gave him all kinds of reassurance 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 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 but 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 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 can not 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 descend and I felt like I was sort of going crazy. I tearfully told Doc, "I think I have reach 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 bare to hear them. So I was laying 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 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


  1. Hi Julia. Thinking of you today. Jami

  2. Wow Julia what a swing! I love the imagery (and laughed hard at the poop). You know when a kid is exhausted everything, even the things they love are harder? You are asking a lot of yourself, give yourself permission to take a short break every hour, every day. Ask for help every chance you get and you and Doc rest and romance so that you can pace yourselves on this arduous journey. Even though Aria is healing you haven't had a chance to "catch up" and rejuvinate. I wish so much laughter and goofyness and just plain silly all over your home this summer.
    Thanks for sharing so much,