This post is a transition from post esophagectomy updates [he was 6 months post op 3 days ago] to time in this journey since being diagnosed as stage 4 [today is day 29, figured it was close enough to 30 days for the transition!]. This past month has been something of a whirlwind.
He and I are trying to just keep on as normal. He seems to go through spurts of “I will outlast their expectations” to the dreaded “what ifs.” Nothing is guaranteed. He gets that. I get that. He does have frustration with the state of his gut not cooperating. He thought that after two chemo infusions he would be able to eat at least soft foods again. So, he gets discouraged when even clear liquids cause problems at times. I provide him with the most support I am able.
In my own mind, I sort of knew that only two infusions would not produce a full result. I feel like he is doing better than he thinks he is. Not knowing how he will feel from one day to the next, or even from morning to evening, has become rather vexing. I met with one of my providers on Friday so I could get some help staying on an even keel. As strong as I try to be, I can feel when the cracks in my armor grow, and know that seeking help is perfectly okay.
So, stress for both of us. Frustration for him. Anxiety for me. Fear for him. Uncertainty for both.
It’s a fairly vicious cycle that we handle with no small modicum of grace. This man is a fighter. Even when I can see the doubt and fear in his eyes that he won’t make it, he tries to find humor, or I can get him to smile. I think the only thing that really bugs him is anyone constantly checking in to see how he’s doing. If anything major happens, I let people know. He doesn’t like being reminded constantly that he is sick. He knows.
And he misses food something fierce.
I have a handle on his TPN. I set him up every night and disconnect him every morning. We have tried getting him to do the disconnects, but he does not want to think about it first thing when he wakes up, especially if he’s at a point when he feels unwell or is in pain. If I ever had to leave in the morning before disconnect though he is physically capable and I have a guide that I can leave the supplies on that he would follow step by step. So far, so good on that score. We are increasing his TPN volume tonight. They were underfeeding him that was before, since he was insistent on taking whatever he could by mouth, but I think they realize that by mouth is touch and go. Need to make sure he has energy.
We have taken all tablets and capsules out of his regime. Everything needs to be IV or oral liquid or topical. Unfortunately, even oral liquids can become a challenge. I am going to try and coordinate with his team to have VNA orders for IV Reglan 3 times per week to supplement the oral liquid. That seems to be what is working best right now. Would be greatly beneficial. They won’t let me administer medications through his PICC for insurance and liability purposes. Pain in generally under control with a baseline of 4/10. I can usually tell when the pain level rises.
Memory seems to be what he struggles with the most, other than not being able to have solid or even soft foods. We have had a small spat or two over him not remembering when appointments are. I tell him, put it in the phone calendar, sometimes text him, and even get him saying okay. But, he still forgets. Trying writing them down on a paper calendar, two separate ones kept identical, to prompt him to look at the phone for details. There is one next to the main two places in the house that he sits. We will see if that is more effective.
Serious Talks and Paperwork
We’ve generally discussed end of life and final wishes. Still need to get things squared away and written down so there will be no question as to what he wants when the time comes. I am really not going to want to fight with people over decisions or be run roughshod over in grief. We do not anticipate a quick need for these things, but it will be a relief once they are done, so we don’t have to consider then anymore.
We’ve also been to work on trying to get disability and/or SSI. Figure he has to be eligible for something with a terminal diagnosis. I am doing all the research I can without making myself batty.
A Little More Humorous
Amidst all of this, he got a jury duty summons! I could not help but laugh. It was for a location 45 minutes to 1 hour away from home. Was like, NOPE! Immediately had his oncologist write him a letter to hopefully get him disqualified. Of all the things to pop up in life right now, that is the absolute least of what he wants to deal with.
I know that he still had spirit to fight with. I can show him stupid little pictures or jokes that I find that make me laugh, and he will shake his head and smile at them if he doesn’t laugh as well. My weirdness still helps ease his spirit when days have been rough. I constantly catch little hidden smirks and smiles at things I will say or do, so he IS still with me.
Hoping that after 2 to 4 more chemo infusions he will actually start to feel better and possibly be able to eat something. We’re looking at another 1 to 2 months [infusions every other week] and he will also get a repeat scan to see if tumors look stable, have shrunk, or else wise.
All I focus on is making through every day with my head still on my shoulders, my mood stable, and to have not been thrown off of this roller coaster ride yet. Will continue to support him the best I am able. I pretty much let him run the show. This is what he has to deal with, and where he is at right now, I don’t tell him no. He’s smart enough to make intelligent choices still, so if he chooses to try and eat, or anything else, I will ask him if he’s sure, but I do not tell him no.
What if something were to happen I lost him tomorrow or next week? Goodness forbid. But I will not deny him anything that could bring him any amount of joy or solace even if it is short lived. If at some point he is unable to make decisions on his own, I would reevaluate that course.
May I continue to enjoy the company of my husband for years to come. May we have more good days than bad. May our journey be one that allows me to remember him with love and joy far surpassing his end days. I love my husband.