The Week That Was

Lessons we think we’ve learned, turns out, we haven’t, yet. Last week was tough. I had been having some numbness in my big toe, new numbness, and it struck a note of concern with the docs. They ordered some scans, which were about due anyway—it had been 3 months. Their concern, regardless of how mild and precautionary, sent us into a bit of a tailspin here in Bath. We tried not to worry, tried not to stress, but we worried and stressed. I stressed so much my shoulders turned solid with knots and my jaw got tight. The tension in my face and neck caused me to be dizzy. In the spirit of full disclosure, I reported the headaches and dizziness, which alerted the docs more—they ordered a brain scan on top of the other scans. They informed me that the potential for a spinal tap loomed. AHHHHHHHHHHHHH!!!!!!!!

Dick and I went down to Boston last Monday night and I was poked, prodded, stuck, and scanned from 5:45 am to 6:00 pm Tuesday. Long story short, everything looks clean. Collective Phew and giant sigh of relief all around. The only hitch was a decrease in my lung function, resulting in another increase in the dreaded prednisone. As Doctor Joyce concluded, this pnumenitis is something that is and will be tedious to treat.

But here is where the new lesson lies for us. How do we live with this bastard in our lives? I liken it to having an alcoholic in the family— the threat of this illness is now part of our family. It wreaks havoc, but we don’t get to choose. So how do we live with this, own it, acknowledge and not deny it, but not let it control us? Not let it ruin a perfectly lovely autumn week? We thought we had that down. Turns out, we didn’t. So we continue to work. This lesson will likely rear its ugly head again and again, before scans, at anniversaries of diagnoses, perhaps even birthdays and holidays. We must learn how to live with this bully in the neighborhood and not let it steal our lunch money time after time. It’s the new normal for us.

We have had some great moments in the last few weeks. We took Finny to a Halloween party, excuse me, a Spooktacular, for his first Halloween. Dick was a Sheik, Finn was his Genie. I was a Fortune Teller, which is ironic considering I was so worried about my impending scans and couldn’t tell myself that all would be well. Nor did we ask Genie Finn to grant us any wellness wishes. Pictures on the website.

I took Finn for his first pool swim at the Bath Y. I have to get the procedure down—where to put him while I’m changing so he doesn’t crawl around on the wet floor, how to keep him warm after we get out of the pool, all the detaily things. But he had a good time and loved the water. Splash splash splash. More this week for sure. I did use the handicap sticker for that adventure.

I have a striking head of hair these days…those of you who haven’t seen me in a while will not recognize me walking around with my fuzzy lid. No pics yet—I am very particular about photographs of myself…

So this will be a short one. I didn’t write in the midst of our chaos because I was paralyzed. There was a part of me that had myself convinced I was going to hear that lymphoma was back, and that I was going to die from it, soon. It’s crazy where we can go in our minds. The truth is, I don’t know if I will die from Lymphoma or not. I don’t know if I will die young or at a ripe old age. I don’t know. I can accept the uncertainty for myself and my husband; I am less peaceful about the uncertainty for Finn. I wish he didn’t have to have the threat of this illness taking his mother hanging over his life. But learning early to live with this question mark, understanding that life comes with no guarantees for anyone, coming to terms with these big, grown-up questions as a young man will serve him well, I think. So for now, we find peace in corners where questions loom, and we work at being Comfortable with Uncertainty, as Pema Chodron puts it. As I discovered in my poem, we aren’t “getting there”, we are there. Here. This is it. Life as we know it. It’s scary wonderful and as good as it gets, and we smile and laugh and love each other through another day.