The Minutiae of Life

 

 In browsing my files, I found a piece I wrote at the beginning of Ren's chemo journey. We had no idea what the future would hold. We hoped for a few uncomfortable months then a return to almost normal, until the next flare-up. We had toyed with the possibility of a journey to some foreign place in our plans, now that the pandemic was easing. But it was not to be.

Crossroads

 

Jan 22, 2022

With Ren’s returning cancer and the looming chemo infusions, I feel as if I am at a crossroads. I cannot avoid crossing over to the next phase of our lives. The cancer has “progressed” into his bones, and as he said when looking at the bone scan report: “I’m screwed.” I couldn’t argue. The infusions can’t cure him, but just delay the further spread to give him a few more months, perhaps as long as three years. I am looking at him getting progressively worse. Already his hip aches so much he has to take Advil three times a day. And I wonder, how much longer until the Advil is not strong enough to relieve his pain?

Along with his physical ailments comes the inevitable depression. He is painting a new project, so I’m hoping that will keep the major depression at bay. He is much more down, though, than he was before the bone scan. But he did go out yesterday and spend James and Brooke’s gift card at the art store, Blicks, so again, that indicates he is fighting the depression.

As for me. I must stay upbeat and positive. I must not allow his diagnosis and depression to pull me down. He has stated he needs me to stay supportive and not fall apart. From my brush with cancer in 1996, I know that is so. He can lean on me now as I could not lean on him then. We need to believe we can get through this. But of course, we can’t. He has a death sentence, as do we all, but his will probably be sooner than mine. And in between?

The infusions will be every three weeks—for the rest of his life. They estimate he will have one week of sickness for each infusion. How sick will be determined. Bleeding is a side-effect of this medication, so he will have to be careful not to cut himself shaving, nor make his gums bleed. Having to be infused every three weeks with one week of sickness means our vacation time is severely restricted. Doesn’t look like an overseas trip is in our future. So much for a last trip to England, or Italy, or Amsterdam.  

As Ren’s bones deteriorate, I am assuming his bodily pain will increase. Already he is limping around and grimacing if he neglects to take the Advil on time. He takes it at night so he can sleep without pain. So far that is working, but I wonder for how long. So far too, his appetite is holding. He still enjoys a treat of ice cream with chocolate sauce and chocolates. I don’t know how the chemo will affect his appetite, but the doctor mentioned last year that he shouldn’t worry about losing weight. I suppose they expect him to lose weight as the chemo takes effect.

He must not drive until he figures out how the infusions affect his eyesight. That means I will need to be available to drive him to and from the doctors and anywhere else he wants/needs to go.  Already I do most of the cooking, so that won’t change, but I wonder what else I will have to do to fill in where he used to be. I hate to think that I have to call one of the children to do simple things. For instance: this morning I asked him to replace a screen on the kitchen window. I tried several times but couldn’t get it to fit. He did it. Later I tried to open a zip lock bag which was really tight. I couldn’t; he could. I asked him to run his shop vac to suck up a spider in my way in the garage. He actually captured it with a broom and took it outside. But in each instance, I wondered how I would manage when he was no longer able to help, or when he was no longer here.

And that is another unknown. If indeed Ren does go first, how will I manage on my own? Who will look after me if I’m ill? Who will call the ambulance if I fall and hurt myself? Money-wise we have enough now—not riches, but enough to get by with a few luxuries now and then. But—what about if I am ill enough to need nursing help? If I have to sell this house, how long will that keep me in convalescent care? What if I get dementia? Where will I go? In-house or in a facility? Who will make that decision? How will it be paid for? At least there will be the two pensions to help out. Spend it all, I say!

If I am well with Ren gone, how will I spend my time? What activities can I do that will be safe, i.e. not keep me out late and vulnerable? How long will I be able to drive? How long will I be able to keep my brain agile enough to write? How lonely will I be? I do not want to live with any of my children. The company might be nice, but I need, and they need, privacy. You can’t have that when you live together.

I’m always saying, “Don’t cross bridges until you come to them.” But I can’t help wondering about the future. I’m not averse to planning ahead. But I do realize it is impossible to plan for the unknown. I will just have to gird my loins and be ready to adjust and adjust and pray that I stay healthy.

And start to sleep well.

 

March 21, 2022

Now that Ren is well into chemo (3^rd infusion tomorrow) I hold on to my sanity through the minutiae of life. To live another day, to keep on going, we have to eat, drink, sleep, and attend to other daily functions.

 The temptation is to drop everything, to focus on the symptoms, the progression, the prognosis, the accommodations needed. But in between all this, I cling to the small things: phone calls, successes and trials of the grandchildren, travel plans, and work news for my children and friends. Our household cooking, cleaning, shopping, everyday life, still goes on and that is encouraging. When he sleeps, I can sink into the writing, forget my worries while my mind plots and plans and moves my characters around. Just like reading, I can escape for a short while.

Part of the accommodations of this cancer treatment is coping with Ren’s depression. He has said he will find a way to end his own life before it gets too bad. I sympathize with his view, but I have a quibble about what “too bad” means. I also find myself nagging him to do what he has been told to do, e.g.

1.      Rinse his mouth four times a day with the prescription mouthwash. He insists once a day is enough. Then complains about his mouth hurting.

2.      Drink enough water. He sips. For one day he drank enough and felt much better. Then he got tired of drinking and started sipping again. Dehydration causes fatigue.

3.      Force himself to eat even if he doesn’t feel like it because his mouth hurts. Without eating he gets weaker and weaker. And fatigue sets in.

4.      Walk, just a little, on days he feels better. “Two blocks down and two blocks back,” I said. He shrugs and doesn’t do it. And gets weaker and weaker.

 

He also keeps threatening to end the chemo because the side effects are too difficult. The sore mouth prevents him eating properly, and he’s lost a lot of his sense of taste. (See #1 above) He does take the nausea pill when he needs to. It works. He complains of fatigue all the time. (See #2 and #3 above.)

And so it goes.