Phantom Husband

Wednesday October 5, 2022

So. Ren is gone. Not gone fishing, nor hunting, nor to a conference, nor camping, nor to some hussy. He’s not off to lunch with friends. Nor has he gone to his Fishing Club or his Art Club. He’s not taking photos for the Art Club website, or at Blicks buying supplies for his latest painting. He’s not at Galpin Ford waiting for our car, nor at the carwash or store. Nope. He’s gone for good. He has no phone, no computer, no magic watch. He can’t call home, nor answer my call. He’s gone, gone for good.

They say when you lose a limb you feel it still. It’s called a phantom limb. I have a phantom husband.

At night he’s with me in bed. I turn over and see the shape of his head on the pillow next to me. And then he’s gone. I pass his office and the shirt on his chair is filled. He works still at his computer. I turn my head to ask him a question, but he’s gone. I look for him in his arm chair, at his chair at the table where we ate so many meals, made so many plans, but he’s faded away. I feel him next to me as I watch television, but when I turn to laugh with him he’s gone. And yet. He lingers still.

I feel him in the walls where his paintings hang. I know him in his office filled with his debris—his pens, his glasses, his canvases, his photos, his books, his paints, his ham radio, his computer and printer, and paintbrushes, and tools.

But. I can’t touch him or hold him, nor laugh with him or grump at him. I can’t kiss him or look him in the eye. He’s gone.

What will I do?

 

Everyday Life Continues

September 10, 2022

At Labor Day we had a lovely birthday weekend for Ren. The adult children were all here, as were those grandchildren who are not in university yet. (The others had visited earlier in August, before they left—except for a granddaughter studying in Switzerland.) Some of the family who had not seen him recently, were shocked by how ill Ren looks. However, he enjoyed seeing everyone and was able to stay up and awake during their visit. It was a treat for both of us.

We had also had dinner out with two sets of friends in August. In mid-August we had a cheerful dinner with a coworker of mine who is married to a jeep/camping/hunting buddy of Ren's. We went to The Smokehouse, a favorite of Ren's. He couldn't eat much but did drink his usual Manhattan. On his actual birthday, August 31, we met friends of many years at his favorite BBQ restaurant. I had to drop him off at the door where he waited with a walking stick until I had parked the car. He walks slowly now, but was able to make it inside without a rest. Although Ren couldn't eat much, he did order dessert. When it arrived, we all sang Happy Birthday with a candle in his ice cream. He did enjoy that.

All of us were well aware it would be his last birthday.

I worry about Ren's alcohol consumption. His cancer has spread to his liver. The doctor said, besides the original tumors, he had noted there are more that are “differentiated.” Those are more aggressive. So what does this mean for Ren’s overall day-to-day life, I wonder? He not only continues to drink, but he has increased his alcohol intake from one or two drinks a week, to almost daily. He also had me joining him, until I realized sometimes drinking made me feel ill. I found the courage not to feel guilty about not joining him. So now I have a light gin and tonic with him once in a while at home and a glass of wine if drinking while we’re dining out. Since I drive us everywhere, I have to make sure, that I am stone cold sober when I leave the restaurant. So usually my wine still has a couple of ounces left in the glass when we leave. Better to waste it than to drive wasted!

But I wonder if the increased alcohol consumption is contributing to Ren’s stomach upsets and perhaps his insomnia. If his liver is already compromised with tumors, how is it handling filtering the alcohol? Is this causing the increase in nausea and bowel problems? Isn’t it better to be sober than ill? He enjoys a drink or two, and I don’t begrudge him that, but I don’t want him to suffer needlessly either. But I can only advise and cannot control him. Nor do I want to!

 It is hard to know when to help and when to let him struggle to manage by himself. For instance: when he is trying to get up out of a restaurant booth, he feels badly when he cannot do it by himself. I stand by ready to help, but choosing to know when to step in and when to hold back is tricky. Sometimes he snaps at me when I ask him if he needs help, especially when the answer is yes. He is just angry with himself and his helplessness. I know that. And I try not to let his bad temper get to me. It does remind me of some reactions I saw from his mother though, and that triggers big time annoyance on my part which I have to choke back.  

It is awfully hard to watch my dear husband hang his head as he sits in his chair at home; or watch him walk with back bent, head down, gingerly making his way across the room. Or sit up in his chair with his eyes closed for minutes at a time--not sleeping, just "thinking". He wants to fight this thing, but he often seems wearied with the fight.

 

Chemo, ctd.

September 10, 2022

After five months of one chemo the PSA levels were rising. The doctor gave him a "treatment break" and the PSA levels shot up. He then started on another kind of chemo. At first the levels rose even more, but Ren went ahead with the second dose anyway. The side effects were just as bad or worse. Just as Ren decided he'd had enough, blood tests showed the levels had dropped. So he had a third infusion of this same chemo, and we will wait to see what the blood tests show next week. If they don’t drop significantly, Ren says again he will stop all treatment. 

The doctor mentioned Ren is in Stage 4 Prostate Cancer. Interesting to know the actual stage. (How many stages are there? I didn't think to ask.) He also said if treatment stops, Ren has less than six months to live. The treatment would perhaps give him a couple of more months. The question we all ask: Is two extra months or so worth the side effects? Christmas is just over four months away. If he stops treatment, will he make it until then? If he continues with the chemo he might see in the New Year.

Ren asked the doctor about the medication for ending his own life. The doctor described the process and told him that he has to be cognizant enough to take it himself. If anyone gave them to him, it would be considered murder. The doctor also emphasized that Ren is always in charge. He told Ren he could always order the meds and just keep them in his “back pocket,” and not use them until he was absolutely sure.

I have also told Ren he is in charge--of all of his health decisions. I will honor whatever he decides. I love him dearly and cannot imagine life without him. But. As much as I want him to live, it is agonizing to see him suffer like this for no good result. Endless days of misery is a terrible way to end one’s life. If it were me, I would want to end it quickly rather than linger and let my family watch me deteriorate. However, that is something I won't share with him. It has to be his decision. 

Early on in this saga he told me, "I don't want to die." I don't want that either.

Chemo

 September 10, 2022

Not much has changed.

Ren still doesn’t eat enough or even much. I bought protein drinks which he uses for meals, especially lunches. We go out to restaurants, and he orders normally but eats very little. When he takes leftovers home, he rarely eats them. He has lost weight: probably about twenty or thirty pounds. His hair is completely white, and there is very little left on top, and the sides are still there but thinner.

He still won’t drink enough water to keep himself hydrated properly. He frequently gets diarrhea or constipation. His muscles have deteriorated a great deal. He usually needs help rising from the booth in restaurants, and he has to manually pull his legs into the car.

He sleeps a lot. Taking a shower and drying himself wears him out. He then needs to rest or sleep for an hour or two. And most of the time after lunch he will take a two or three hour nap. At nights sometimes, he sleeps with just one trip to the bathroom, but at other times he is restless, has insomnia, and most nights ends up on the couch where he seems to sleep better.

I can’t help wondering if he drank more water would some of the fatigue be eased. But the symptoms of the chemo do include fatigue.

 

 

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.