The First Day of the Rest of Our Lives

Our emotional roller coaster has continued over the past few days. Yom Kippur was particularly difficult, and not just because saying Misheberach makes us both cry. Recent developments have frankly left us at somewhat of a spiritual loss. Active topics of discussion in our house over the last few days have included everything from the superstitious (“Perhaps we shouldn’t have given up on keeping a kosher kitchen last year”) to the pragmatic (“Maybe we should consider doing a better job of observing Shabbat by not running errands on Saturdays and focusing more on quality family time”) to the highly charged emotional (“Why is this happening? What more could G-d want from us?”). Over the course of the past two and a half years, we’ve met many other families in the cancer community, and in a strange way I’m jealous of the ones who have an unconditional faith in G-d, which we don’t necessarily share. We’re struggling with this and made an appointment to go see our senior rabbi; I’m hopeful that will help reset our spiritual bearings.

As an aside, I couldn’t even get through the Day of Atonement without committing my first sins of the year. We went to early services at Temple Israel then were home for a few hours before I planned to go to afternoon services at my parent’s temple, which is closer to home. During the interlude, I ran a quick errand (sin #1, “working” on a High Holy day), to take my digital camera, now disabled from dropping it at the aforementioned BU event, to the camera store for repair. This seemed like a harmless thing – I was eager to get the repair process started, and knew if I didn’t take it in on Monday that I probably wouldn’t be able to get to the store while it was open at least until the following weekend. I even justified the excursion in my own mind by taking Mikki and her pal Leah on a walk to the store with me.

Once there, the guy behind the counter gently reminded me that if the camera had been dropped it wouldn’t be covered under warranty. As he looked in my eyes for some explanation of how it broke, I bit my tongue, nodded understanding and redirected by asking how long the repair would take (sin #2). Stupid, I know, but the kind of small ethical lapse we all (or, almost all) too easily fall into on a daily basis. Cindy, always the shining star of morality, was not happy with my white lie and the resulting speculation as to whether they would ultimately cover the repair or not, particularly given that the falsehood was carried out on the most sacred day of the year. Shamed into submission, I called the camera store today and confessed (turns out the guy didn’t really care after all and thought I was a dork for calling to alleviate my guilt, but whatever). I also talked with the girls about it at breakfast this morning and tried to make it into a bit of a learning experience for all of us. I don’t know if doing “the right thing” will help Samantha in the eyes of G-d, but somehow I feel like I’m becoming a better person from all of this.

Today was a big day for us. After a several days of furious preparation on Cindy’s part, Samantha took her first dose of the new chemo tonight. In case you’re curious, she’s scheduled for 8 – 6 week cycles (48 weeks total), assuming she tolerates the drugs and the drugs are effective at arresting the growth of the tumor. Unlike the last protocol which was largely done via injection, this protocol is predominantly oral, with the first three days of each cycle being particularly intense. Essentially, she has to take various pills every six hours as well as an assortment of meds to control nausea and other possible side effects (I won’t bore you with all the details, but suffice it to say those first three days are a huge grind).

Oral treatment sounds great in concept – less time stuck attached to the IV pole at the Dana Farber -- but like most 5 year olds, Sammi simply won’t take pills. Our friend and fundraising collaborator Liz Ragnoni rode in to the rescue on Sunday to show us the bag of tricks she used to get her son TJ through the drill, including all the gear needed to essentially turn our kitchen into a small pharmaceutical plant. These meds are highly toxic, so we have to wear surgical gloves to handle them, as well as cover the counters when we’re working with them. They even advised us to dispose of our medicine related trash in a biohazard container, like we happen to have a spare one of those lying around! The gist is that we need to go through some machinations to get the capsules into some sort of flavorful suspension in order to have a prayer of getting this stuff into her little body.

Samantha watched most of this process with her trademark curiosity and Liz worked magic getting Samantha’s mindset just right, but it still looked intimidating to us. Some of you may recall from our white paper, some of our lowest points in the last chemo round had to do with battling Samantha to take her oral meds, including many instances of her spitting them back up and several father-daughter wrestling matches worthy of pay per view (perhaps the lowlights of my parenting career). The stakes here are pretty high and we simply can’t afford for her not to take the meds, nor the wear and tear on our family if she really puts up a major fuss. Our anxiety skyrocketed as the first dose approached.

I confess, in the end we resorted to bribery, a temptation we don’t usually succumb to. Samantha desperately wants a Webkin (whatever that is), so Cindy told her she would have to earn it by taking her medicine without a fuss. Sure enough, this evening, Samantha bellied up to the counter at the appointed time, and with only the slightest hesitation, got the job done (she even claimed to have liked it). Shortly after, she snatched Cindy’s cell phone and dialed up Safta Linda to proudly inform her about the visit she anticipates making to the toy store on Sunday to purchase said Webkin.

Problem solved for now, but day 3 of the cycle is Saturday, when a few extra horse pills helpfully get added to the routine. In the meantime, it’s now 1 am and I’m off to wake Sammi for her second dose. Cross your fingers and we’ll keep you posted.

AJ