Picking Up the Story Line

25 Apr




When Lenox was first diagnosed with ALL, I was reading a ton about cancer, including, among other things, a memoir from a woman whose 3 year old son had the same diagnosis as Lenox. Her memoir was insightful for me and I appreciated getting a picture of what we might expect to face based on the experiences they went through. And then, right as her son was transitioning from his really intense consolidation phase into maintenance (the first 6 months or so), the book jarringly ended. I was aghast – how could the author think I didn’t need to know what was still happening and what would happen to her next? (translated as what would happen to us next). Did her son suddenly take a turn for the worse? What transpired that made the story just peter out…?!? I was frustrated with her and the publisher – how could they end it that way? – I just didn’t get it.

But … everything comes full circle and now I get it! I know why she quit writing, or at least can speculate. Because I was just reflecting on why I have also quit writing and posting to our blog. I had found the writing not only a great way to share but also cathartic and many of you have asked why I stopped? Like my angst about the memoir’s abrupt ending, some of you may have felt similarly about Lenox and our “story” – what has happened?! How could I have just dropped the “story line”? So let me tell you why the writing stops…two reasons.

First, exhaustion. Mental exhaustion that feels almost physical – as though it’s in my bones. (For you social work friends, yes, I realize that with my depression background its a mighty tenuous line between the two.) As many of you have experienced, our bodies and minds seem to carry us through the worst of times with a seemingly endless reserve of mental and physical stamina. As long as we truly need to focus on a crisis, our body will put itself second.

For us, as we pulled out of that arduous six months of cancer diagnosis and treatment crisis, we entered the celebratory period of being done with that phase of treatment, getting back to what we thought would be “normal” and the holidays. We also had the excitement in late January of the Make a Wish trip and the big excitement of Liz and I both going back to work full time (thankfully, we are both challenged at work and happy to be back). And then my body (and even more my mind and emotions) seem to have said… “I am done now, OK? You wore me out!” Like a gradually placed ton of bricks – my body and mind recognized that the crisis had been averted, that big “returning to normal” changes were behind us and… Fizzle. The “oomph” that kept me going was so done.

So my new normal seems like a balloon mostly deflated – just bumbling along, having energy for what is most important, and um, well that’s about all. So We often have sinkfuls of dirty dishes; unvacuumed but well played on rugs; and cars full of the flotsam and jetsam of parenthood. Texts and emails I receive are often read, but then distractedly forgotten. I seldom cook. I have an inability to keep a lunch or coffee date (or running date) with friends, even when I really want to go! Parties and evites sound great, and then I never get them on a calendar and only realize days later that, oh crap!, that was this past weekend, not next weekend! As well, I seem to be unable to even engage with others to coordinate, and follow through on, play dates or outings. I realized how drained I was when we were shopping for clothes and all I wanted to buy was pajamas! My most appalling, but most secretly escapist, sign of perhaps needing a “break” from things for a bit is my full-fledged immersion into Vampire Diaries (a high school vampire TV series) and into Young Adult fantasy fiction (vampires, werewolves, alternate realities, oh my) Really?! Yes, I am pinking in embarrassment as I say it, but man that is some totally fun cheesy reading! I am at least moderately gratified that I read that dross while also reading several decent non-fiction selections.

I won’t speak for Liz but I can tell you what I observe about her – that while she seems to feel some of the same fatigue from the whole process, and feels the same apathy about housework as I do (but she always has :)), she has been great about channeling her time into really focusing on running (looking good LaLa!) and reading up on management books (see don’t vampires and wherewolves sound far more engaging?).

Second, what you have been scrolling down to find out, is that there is really only one reason the exhaustion was even permitted to sink in, which is that Lenox is very good! I have a friend who has been in treatment for Multiple Myeloma, and she says it best about cancer blogging and updating loved ones: “No news is good news.” May be cliché, but REALLY I am so excited to have NOTHING to tell you! Our world, with the exception of intermittent jolts of “cancer-ish” things, is a typical routine, just like yours, of school days, work days, swim lessons once a week for the little fish Lenox (who can now swim about 10-12 feet without assistance), getting queso at our favorite restaurant, dance class on Saturdays for the little ballerina, and as always, rounds of dinosaurs, snuggling, laundry and Play Mobile toys. Like all kids/parents, in the evening we do dinner, bath and pajamas; we just add a quick slurp of chemo “juice” each evening.

Until recently, We had only been going to the oncology clinic about once a month for them to check Lenox’s blood counts, give her an IV infusion of pentamidine (anti pneumonia medicine) and then usually some other chemo shot that we are slated for. Recently it has been more frequent as we start our 2nd cycle of maintenance, but should go back to less frequent. Periodically, we will have a visit to the actual hospital for a “day surgery” which, as you wise educated readers already know, is her going under anesthesia so they can do her spinal chemo. And today wraps up a week of steroids. But mostly, we just live a normal day to day kid’s life… sometimes it seems so normal again I can almost forget that our baby is being treated for leukemia.

As I mentioned we occasionally have a “cancer-ish” incident arise that makes us realize in a flash that we are indeed living a new leukemia normal, which of course would have its learning moments. A few examples:
* Lenox has a few bruises and is tired for a day and I panic thinking the leukemia is back.
* When going for what is really just a once a month clinic visit, Lenox due to the infrequency, gets more upset about having her port accessed and asks if the leukemia is back.
* When other parents/co-workers ask “so she is all better now right?” I am totally unsure what to say – yes, she is better, liking school and swimming like a fish — but she will have treatment for 2 more years and takes chemo every night… it feels like a limbo.
* At the parent teacher meeting, I learn that Lenox seems very absorbed with her port and anxious about other classmates touching her. Which worries me of course.
* Learning that a side effect of one of the meds, is that her temp can drop all of a sudden and we just need to bundle her up in layers and layers to get her back up to “normal”.
* Writing a blog post that when I re-proof discusses chemo and pentamidine and clinics, in the same time as saying wow, things are pretty good – WEIRD!

In sum, I posted to 1) give an update, 2) apologize for the abrupt end to the blogging, but now you have a sense of why, 3) to affirm that in our case, No News is Good News, and 4) to explain for those local folks, that in spite of Lenox being well, I am now pooped, ergo quasi-reclusive and relatively unresponsive. I am trying to get better about it!

Thank you again for your massive support and love for Lenox and your patient forgiving friendship to the moms. Also, the Cure Search Walk will be September 29, 2012, and since we have much planning time we want to have a bigger showing and raise even more money. We would love as many of you as possibly can, to join our team, raise funds or donate, and walk with us! We love you all!


One Response to “Picking Up the Story Line”

  1. trishlm1 April 25, 2012 at 11:46 AM #

    Either you were reading my mind or I was reading yours. Just today, I went to the Lenox FB page, wondering what was happening. It was the first time I had visited in so long and thought that no news was probably good news. Glad to hear you are all well. I’ve always heard that after every “event,” sickness, divorce, etc… the body and mind need at least a solid year to recover. So, take it easy, take care of yourselves and of Lenox and let’s talk in January 2013! : ) — hopefully before but you know what I mean! Thanks for the update!

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