September 9, 2008
Subject: September and Aria
I thought you might enjoy some recent pictures and an update!
It is Sunday September 7, 2008. I'm sitting in our library and the window to my left just slightly behind me is open a bit. I can hear the leaves blowing in a gentle breeze as well as one of the many wind-chimes hanging from a nearby branch. The atmosphere on the farm today is tranquil as autumn begins to peek in subtle little ways. We've been harvesting honey plums, basically eating them by the dozen right off the tree. The skin of these apricot size gems is a custardy-yellow when ripe and when bitten into gives a marvelous sensation of puncturing something taut only to be rewarded by a burst of sweet juicy plum nectar. The fruit itself is a golden honey color. I prize these plums above all other fruit in our orchard and this year we were rewarded with a kingly sum of them. We have two peach trees that are both, unfortunately stressed. One gave us our highest yield of the sweetest peaches you've ever tasted but I'm afraid this bounty was the tree's final gift. We'll have to cut it down later this season. The poor thing is shedding its bark and losing limbs right and left. Still, we picked a large basket of peaches warm and ripe. Rianna and I ate several on the way into the house from the garden the other day. The other peach tree is weighted down by another nice yield that is about a week or 2 behind and so we'll be harvesting that tree soon. It looks a bit sad, if trees can have such emotion and I do believe they can. We'll have to plant a few friends for it to help boost the morale in Namaah's garden, which has been horribly neglected and is now shockingly overgrown. One of our apples trees has shed most of its apples, which are now lying at its base. The yellowjackets love them and I love that I have easy squashing access as they linger in their greed for more and more apple treat. Yellowjackets, this time of year, are just plain predatory, stinging unprovoked and with a sneaky silence that I abhor. I smash them, step on them, squash them and pulverize them with sickening pleasure, I'm afraid. So, I'm not too dismayed that this one tree has sacrificed its fruit in this regard. I'm quite grateful in fact. I found an apple on the ground that had recently dropped and ate it with pride as I snatched it from some yellowjackets, who I'm certain were thinking it was another tasty morsel for their beastliness. Our other apples trees are doing quite well and we should have a nice showing of fruit in another few weeks. In terms of harvest, that is all I have for this year and I don't have any regrets about it. There is some sadness to be sure, but I simply could not manage our gardens this year and that is sometimes the way of Life.
Aria had a full follow-up appointment on Friday, August 29, 2008, which seems like a long, long time ago. This appointment celebrated her first month of maintenance treatment and I must say she is doing exceedingly well. Aria's blood work for that day showed that her ANC dropped significantly to 1600 (2 weeks prior it was 5700), which is near the maintenance target of 500 - 1500. Dr. Trobaugh was very pleased but slightly cautious because Aria's body has not yet fully maximized the medication on board. When we go to clinic this coming Friday September 8, 2008, which is the 6 week mark of maintenance, we ought to have a better idea of how well her body is metabolizing her current chemo regimen. It is possible that her numbers could tank making her more susceptible to infection, which means that we trim a dose to see if her numbers come into target. It is also possible that her ANC will stabilize within that range and we'll be good to go. We just don't know, which is why close 2 week monitoring is so essential for these first few months.
Overall, however, Dr. Trobaugh couldn't be more pleased. Aria's range of motion in her ankles and legs is much improved and the exercises we are doing at home have helped considerably. It appears that leg braces are probably not going to be in our future any time soon and I am so very relieved about it. It is worth saying that I am open to pursuing them if I absolutely had to, but what a blow to the sense of healing that would be and I'm grateful that we don't have to pursue it with any urgency. I was able to tell Aria's physical therapist that I did not take her recommendation and run with it. I felt it was important to be perfectly honest with her and let her know that despite my understanding of what she was telling us and recommending a month ago, it was simply too much for my mind to deal with in that moment. She was so gracious to admit that it never entered her mind how news of leg braces, even used temporarily, might affect me. She stood before telling me that she felt bad that she never considered my perspective in hearing this new. 'How it must feel like yet another huge hurdle to deal with on top of everything else we deal with', she was saying. She told me that she was so focused on fixing the problem that she didn't fully consider the emotional ramifications of her recommendations. I don't blame her in the least for my feelings nor do I hold her responsible for them in any way. She is a wonderful professional doing her job, making appropriate recommendations. There is absolutely nothing wrong with that. What I needed to do in terms of letting her know how I felt was simply putting to ease my conscience knowing that I had deliberately disregarded her suggestions. I felt it was important to explain that it wasn't just a matter of noncompliance. I thoroughly believe that she was grateful for my honesty and I know I feel better having told her.
Our meeting with Dr. Trobaugh was by far the most social of any meetings we've had to date. I had 2 items on my agenda for discussion both of them involving the dental appointment we recently had. I shared with Dr. Trobaugh that on a very personal level I was emotionally caught off guard at having to complete a medical history form in addition to hearing the news that chemo has some negative effects on teeth. These things, as you know, were very hard in that moment and I was unprepared. Again, it is a situation where I don't blame anyone for not giving me a heads up. In fact, Doc reminded me that when we were in the hospital in January Aria was evaluated by at dentist. For all I know, he told me specifically that chemo would cause discoloration and increased decay but I have absolutely no recollection of it. Dr. Trobaugh listened with her serene presence and thanked me for reminding her that these are the kinds of things that parents need to hear as they approach this phase of treatment. In the back of my mind I was thinking, "You are such a total Goddess! As if you don't have enough to think about. You now have to prepare parents for the emotional rollercoaster that appears out of nowhere when attempting to do something normal." I told her that I wasn't sure how parents can be prepared for such things. On the one hand it would be good to know, but on another it is facing yet another 'thing.' Certainly this kind of information would be better to process approaching this phase of treatment versus any of the others.
Personally, this phase is a place where I can rest in my confidence in the entire process. For instance, the medications are no longer new and intimidating. Cleaning and boiling syringes is now common place. Checking the calendar for appointments and follow-up visits is second nature. Navigating the clinic itself and all the people who work there is like visiting a familiar comfortable place filled with friends. This is all coupled with the fact that Aria is doing well. She is virtually completely back to herself. These are incredible changes that have taken 8 months to achieve and it is only now that I'm ready to process new information and do things that are normal and regular. Dr. Trobaugh very humbly took my experience as a reminder that other parents might appreciate the heads up on these weird little unexpected experiences when they approach phases in treatment that allow them more room for normal activities.
We discussed the two issue on my agenda; the overall health of Aria's teeth and the risk for damage to her permanent teeth. I was so relieved to hear that Dr. Trobaugh does not believe Aria's teeth are at any greater risk but reinforced that the recommendation that we have her evaluated often with increased dental cleanings.
Aria was checked out head to toe. Dr. Trobaugh was beaming. Her head was nodding yes constantly, just pleased as punch with the progression of her treatment and healing. We spent a good deal of time reviewing her medication and dosing and she reminded us of the importance of close monitoring these next few months. After some wonderful exchanges about family and fun we were on our way.
Before you get any ideas that this rather fun meeting was an "in & out" kind of deal, let me say that we were in clinic for over 3 hours. Our meeting with Dr. Trobaugh came at the very end just before Aria received her vincristine via her port. In the interim, we were in the playroom playing with toys. Aria roped a volunteer into playing a horsey game with her that she refuses to let me play. "No mom! You don't know how to do this!" I didn't realize this about myself, but apparently I'm a complete moron when it comes to playing with PlaySkool farm animals. Reo contented himself with the stacking blocks tumbling all over the place. Rianna was very busy in the kitchen making all kinds of plastic gourmet delicacies. Doc was able to do a little reading and I was in an exceptionally chatty mood.
I have to say that I had two of the most genuine conversations with two mothers in very different phases of treatment. I saw the family from Montana and they've been living at the Ronald McDonald house for the last 6 weeks unable to go home because their daughter was just finishing her delayed intensification phase of treatment. They were now waiting for her counts to increase so they could go home, rest for a few days and then return to begin maintenance. I can't imagine how exhausting, emotionally and physically, their journey has been. The mom and I really connected for the first time and she wanted to know what maintenance was like. For the sake of clarity, our conversations have always been sincere and the genuineness that's been missing in some sense has everything to do being guarded. I'm fully aware that many, many times I have presented to the world a guarded face, a guarded heart and a guarded spirit, which doesn't always lend itself to being fully present and truly genuine. Sometimes it is just easier to say, "We're doing ok" than it is to open up completely and say what it's really like. Not only that, but often I've encountered people so uncomfortable with my emotion and my honesty, that their responses, although always well intended, land like a load of bricks on my already fragile being. Sometimes it's just safer to be minimal and guarded.
For some reason this mom was unguarded and wide open to having a discussion of our journeys. I was elated. She, like me, was wondering, "So, what's so great about maintenance?" She also let me know that her daughter had the roughest go in the interim maintenance phase, just like Aria. She was terrified that maintenance would be a repeat of that time. Oh, did I know her anxiety well! We breathed together and smiled with rolling eyes acknowledging that we are warrior mamas ready to do battle but hoping beyond hoping that we don't have to. Her daughter's delayed intensification treatment went very much like Aria's. She had a few blips along the way but nothing too difficult to handle. They were tired and ready to move on. I understood that too. I told her with tears in my eyes that maintenance was still 5 medications a day on a good day and that every time Aria says that her tummy feels yucky my heart races and my stomach flips automatically. I wonder if this response will ever go away. I also tell her with tears in my eyes that Aria hasn't felt this well since before she was diagnosed. She plays like she used to. She laughs. She sings. She dances and twirls. She is enjoying life to the fullest again and so am I. Maintenance feels like a welcomed bit of normal to our "new normal". I reassured her as I best I could that for us it has been a dramatic improvement in terms of quality of life. I told her that the most telling thing about this phase is that I have had for the first time space to think about things other than cancer and death and sorrow and fear. She looked at me with tired eyes and smiled. "Oh," she began, "I can't wait for that. All I've thought about for the last 7 months is what are we gonna have to deal with next?" We laughed together and our laughter blended in a knowing sense of relief and understanding after having journeyed similar tumultuous, unpredictable, and frightening landscapes. We ended our conversation with acknowledging the end of crisis and the beginning of an entirely new chapter. With that, they were off and as I watched them leave I sent up a thought that they would soon be able to go home. ( I found out later that it would be another 10 days before they could finally do just that.)
The other mother I spoke to was someone I had seen maybe once or twice and her son looked vaguely familiar too. Come to find out, they are fast approaching the end of his treatment after 3 1/2 years. He, too, was diagnosed with ALL when he was 18 months old. After a few months of trying to treat chronic ear infections, he just seemed to be 'getting worse.' The final straw for them was an obvious lethargy and fever. Blood was drawn and after holding him down to allow the blood draw, she noticed bruising all over his arms. She was absolutely terrified. A few hours later, she told me, their doctor was standing in their driveway with the news. She said that within an hour they were packed up and heading to Spokane. I can't remember now where they were living but I do recall that they have since moved to the Spokane area. I was trying to digest the idea that in a moment life as you know it can become something completely different. It is a profound thought and something that haunts me still.
She and I had the most amazing conversation. Here was a woman on at the end of treatment candidly telling me her story. I was captivated. What I appreciated so much about her was her 'realness.' She was teary at times revisiting those scary moments. She also admitted that she's just 'completely done' with having to come to clinic. She began with something like, "I know this sound so horrible, but I'm just so sick of coming here. I know it's only once a month for a few hours but, man, I'm tired of it. I know it is saving his life and what could be more important than that, but.." She was teary and I interjected with something like, "I don't blame you for being burned out. 3 1/2 years is a long, long time. You're at the end of this part of the journey and yet you have to come here and meet people, like me, who are just beginning or you encounter people who have to repeat the process, which only serves as a reminder that there are still no guarantees even after treatment. You have to interact with people you've know all this time and their kids aren't getting better or it's taking even longer for them to get better. The emotion in this place is like nothing else." She nodded and said, "yeah, it's like I'm so happy we're so close to being done even though we aren't really done. After he stops his chemo, then his body is left to its own devices and then what? We come back here every month for check-ups. I'm happy about his prognosis and that he's done so well but I'm scared too. I'm happy that we're at the end of his treatment but I feel guilty when I see other people still dealing with it." We were silent watching our kids play sitting with those thoughts for a moment. I was amazed that she was so reserved knowing the end of treatment was only 2 weeks away. 2 weeks! What that must feel like?!
I found everything about her incredibly refreshing. I can imagine people reaching the end of treatment and being jubilant almost over-the-top joyful tempted to hide or mask the anxiety and fear that still exists. I can imagine those in her circle of friends rejoicing at being done with treatment without really understanding her reluctance to join them in celebration. I made a comment to that effect and she nodded in agreement and said something like, "How do I even begin to explain to people who haven’t dealt with this what it feels like?" I was quiet and said, "You just tell them the truth."
I don't know what it was about her that captured me so completely. I was overwhelmed with happiness for them. The nearing milestone of completing chemotherapy after 3 1/2 years is monumental! I was overjoyed for them and could hardly contain myself. I also mentioned to her how promising it was for me to see her son approaching the end. There is an end to this treatment and even though it is 19 months away for us, give or take, there is an end. The chapter called chemotherapy will end and a new one will begin. As scary as that is sometimes, there is a real promise there and it becomes more tangible every single day. For her that new chapter will include all the side effects of chemo and for her son part of that includes damage to his kidney and God only know what else. We laughed together at the idea that it is the end and the beginning at the same time.
Her genuineness, her fatigue, her burnout, her realism, her playfulness, her optimism, her worries and fears resonated deeply with me. I was incredibly grateful for every single moment I spent with her. Here she was, this beautiful young stay-at-home mom with 2 older children at school and her 4 year old son playing with my kids. The similarities we shared were fabulous. She owns a little acreage and loves to garden. She has hens and adores her farm fresh eggs. But what I most appreciated was her willingness to say that despite the fact that her son is doing well and that the end of treatment is near, there are unknowns to be faced. This process isn't over despite her desperate desire for it to be. Even though things are well, there are plenty of 'buts' in her view. There was nothing about her manner to suggest that she wore the mask of, "No, no, no, everything is just fine!" She was living proof of my mantra to live true and I'm indebted to her.
Just before Aria received her chemo she came up to me and told me that they'd been hanging out in clinic for almost 2 hours for no reason. She thought they were waiting for test results and began to wonder, "Man, this is taking a really long time!" She finally asked someone and realized her mistake. Sitting in the clinic for any amount of time let alone unnecessary time is a drag. I thanked her profusely for spending so much time with me and her comment was, "Yeah, that was the reason I messed up on the time here. I was supposed to sit and talk with you!" We thanked each other and as she was leaving I marveled at her gift to me. The gift of her time and her genuine self is a prize I will cherish. As she was heading out the door she turned to say good-bye and I said, " I hope I never see you again!" She stopped and burst out laughing, "Yeah, me too. Hope I never see you again...unless we meet up at some cool farm auction or something!" We laughed and laughed. Oh, what a gift it is to laugh and to connect with another person in this way. In truth, I do hope I see her again someday.
In case you forgot, Aria was back on her steroids for 5 days. Doc and I were amazed at how well she did. It is either that or we are doing a better job riding her emotional ups and downs! She didn't seem as emotional this time in terms of her sensitivity, but her patience was next to nil. She also craved noodles and bread again. I was amazed at what she was able to pack away. I hadn't seen anything close to it in a long time. She ate several pieces of bread and then wanted yogurt and then noodles and THEN pizza! Amazing. She's started to really enjoy steak so we indulge that healthier choice a few times a week too and she can put away a hearty plateful.
School started on September 2. Reo is in the first grade. He is away from home for the first time all day long. I was completely stressed out about it and I missed him terribly. I'm feeling much better now and I adore his teacher. He was ready to go 30 minutes early on the second day of school and his enthusiasm has remained high since. He loves it! Aria is back in preschool 3 days a week and seems to be enjoying it. I wouldn't say she loves it. It is a complete departure from her normal lounge around routine. I think she is enjoying seeing her teachers and some of her friends. Once we have a routine down, I think she'll enjoy it a whole lot more. 3 days is really all she can tolerate at this point. Thursday, last week, one of the teachers told me that she was wiped out and just wanted to be held for the last 30 minutes of class. Mind you, her class is only 2 1/2 hours! She's still building her stamina and endurance for such things but I suspect it won't take much time.
As I'm walking this path of maintenance, I'm on a nice flat stretch with a wide view that is completely lit up. The air is fresh, the wind clears my head of worry and woe and I often skip along with sighs of contentment and a few giggles thrown in here and there. Although I'm cautious and I think realistic, I'm also feeling truly hopeful and positive about what's to come. I recognize that this is fully reinforced by the fact that Aria is so well and I dare say that I doubt I'd be feeling as optimistic if her treatment was working less well. It makes perfect sense to have wavering confidence when the process is murky and uncertain yielding less than positive results. I'm thankful that that isn't what we are contending with now.
Step by step. Here I go. I walk closer to mystery embracing with greater actuality this hopeful promise. It is here I pause. It is here I am. ~j
