A week in the life

At the start of my most recent chemo week, I looked ahead at the schedule. On Monday, my husband would be leaving for a four-day conference on the other side of the country. On Tuesday, I would start chemo.

This meant that my husband would be gone from Monday through late Thursday, and I would be home but physically and emotionally unavailable to the kids from Tuesday through Thursday or Friday (depending on how the week went).

Fortunately, we have a fabulous au pair, but my kids are at an age where they simply cannot go for 3-4 days without at least one parent on board, especially when one is sick. Their emotional bank risked being drained.

Alarm bells ringing in my head, I alerted the school and tutors. While they are all fabulous, none are or should expected to be a parent figure, but I knew they would do what they could.

So, on Monday, off goes my husband to his conference. On Tuesday, off I go to chemo.

As chemo weeks go, my treatment proceeded smoothly. Well, other than one glitch: I showed up at Dana Farber only to learn that I wasn’t actually scheduled for chemo. Part of me wanted to say “Great!” and run home, but I stayed put and they managed to find a slot for me.

Then I went home with my little “to go” bag of chemo pumping itself into my port, and I planted myself in my bed for the next few days.

Monday, Tuesday and Wednesday seemed to go fine. Everyone got to their scheduled classes, homework was completed and outside activities were attended.

However, on Thursday, one of the boys got into “trouble” at school. He works hard to appropriately manage his energy during the school day, but on that Thursday, he had few inner resources remaining to control his giggles. His behavior disrupted the class and needed to be addressed. We were grateful that the school handled it well, but, especially because he works hard on this, he felt horrible about himself and his life on many levels. He felt like he failed. Although I tried (pathetically, from my bed and hooked to a tube) to tell him it was okay, this was a tough week and at least it was the giggles and not something really bad, he accepted no excuses for his behavior.

Shortly after that, our other son tearfully told me that he still hopes that I will be healed but he now feels like this is it, this is how life will be: Treatments where I am in bed, days where I lounge around recovering, and then some good days, only to be followed by treatments again. On the plus side, his comments opened the door for us to talk about many aspects of his feelings. For example, he wondered aloud, might it be easier if I just died, because then all our suffering would be done and maybe we could all move on? (I have felt that way many times.) He asked about God and why he would let this happen. He didn’t know how he could continue to handle the stress of living with all this. I get it.

While I am glad that he was able to access and articulate his thoughts and feelings, this was one of the most difficult conversations I have had in my life. I wanted to be fully present for him at the same time that I just wanted to be anywhere else. But he was in a deep hole and it was awful for him and I needed to be there for him in any way that I could, no matter how crappy and inept I felt.

So, there we were. The kids were unraveling in their own ways, and I was not feeling like myself (to say the least) and unable to support them.

My husband arrived home late Thursday night, and we all started to rebuild the pieces of our lives. Slowly, one step at a time. By then, I was finally unhooked from chemo and had a long shower. We were back together as a family. We could move forward.

Luckily, my physical recovery was faster than usual and we were able to have friends visit on Saturday and Sunday. The normalcy of their presence halted our spiraling, provided healing, and brought us back to day-to-day life.

One step at a time, we regained our footing and our daily dynamic returned to what it was, slightly shifting in ways only visible (I think) to ourselves. I hope this experience helps the boys to be resilient in some way, but we are in the middle of the journey, so it is hard to know exactly where this will lead.

We are grateful to be doing this together and to have family and friends who are in this with us, who keep us heading down the path of light and joy and grounding and love. Thank you.

Blessings,
Marie