He’s a total ass, and then he’s sad, and then I hate him. And then I feel sorry for him, and then I’m compelled to divorce him again, and then I love him… right before he’s a total ass again. Lather, rinse, repeat.

It never occurred to me when I divorced my husband ten years ago that I would eventually become his caregiver and the sole means of his emotional, financial and domicile support. But when he was officially diagnosed with metastatic NSCLC seven weeks ago, that is exactly what happened. To be clear, this is not something that slowly eased into becoming the new way we do things. It’s more accurate to say it came crashing down as an instantaneous new reality that seeped inside of every cell and dared me to defy or question what I already knew was true: This is the man you married thirty years ago. This is the father of your children. This is what you are going to do, for as long as it takes, until he can do it for himself again.

I realize it may seem irrational to expect a stage four lung cancer that has metastasized to the bone would be so kind as to allow its host to actually get strong enough to start taking care of himself again, but I am an eternal optimistic through and through. I also firmly believe that if a fight is worth fighting, then it’s worth going in with all your might and your highest expectations.

I don’t just want him to get better for five minutes, but I’ll take it, if that is all that is offered. I want him to get better for real. I want him to have a chance at being a better person than the person he was before he got sick. I want him to have a chance to earn the love and respect that his children have always had for him; but for which he did not earn via exemplary character. And I did not know this before, but apparently I also want him to know that I have never stopped loving him for the past thirty years.

The love I have for him today is a different kind of love than the love I had for him when we were young. Back then, I loved him almost as much as I idolized him and I couldn’t keep my hands off of him. Of course, that changes when you become the type of couple that lives together and grows apart, and that is exactly what happened to us. I love him today like you would love an older brother… one who was a bully and an antagonist, who called you names, said cruel things and took pleasure in making you cry. You don’t really want to be around him and you don’t like him very much as a person, but he is family and you are connected to him and you just don’t want him to die.

So if I don’t want him to die, that means I must advocate for him. Even before he became too weak to get himself around, I knew him well enough to know that he could not navigate the appointments, fill the prescriptions, take the tests or fetch timely results. But what worried me even more, was I knew he wouldn’t understand the slightest bit of doctorspeak. A language all in itself, it’s where every relay of test results is encrypted with secret instructions that insist, “Don’t doubt me, don’t ask me to repeat myself, don’t question me, and just say ‘yes’ when I ask if you understand.”

Sometimes I think that his inability to handle this part of life was his sole reason for wanting to get married thirty years ago. I simply knew how to schedule doctor appointments.

~

I knew my ex-husband was not doing well. I knew this because I worked with him every day at my company’s shop. After years of his not being able to hold a steady job, I offered him a job when I had visions of expanding my then in-house e-commerce business. It made sense to me because if he was doing well, then our kids would be doing well. Simple enough. He had already faced foreclosure twice, he was drinking every single night until he couldn’t drink anymore, and he had zero prospects of work on the horizon after losing yet another job that overworked him and underpaid him. Each time he lost his job, it was scary and it was sad and I felt an enormous burden on my shoulders. There was no way that he could circle the drain and not cause massive emotional damage to my children – or to myself, for that matter – when he couldn’t afford to grocery shop or pay his bills.

But I also knew other things about him, having been married to him for almost twenty years. I knew that he would show up every single day for work, I knew that he was as strong as an ox, and I knew that he had extensive experience with electrical and plumbing and could operate every power tool known to man. These traits, I decided, would be what would tip the scales to propel my business goals and get his personal needs met all with one fell swoop. It would be a win/win situation all around. It made perfect sense to me.

So when I say it out loud that I saw him every day at work, I am utterly ashamed that I did not see how badly his body had been deteriorating right before my eyes. I knew and I didn’t know. He was losing weight and I attributed that to his drinking. He had started limping and when I asked him about it, he said it was because of his bad back. I would ask him time and again to take a break from drinking and he would shrug me off.  I would ask him time and again if he had a problem with his legs, and he would dismiss me. I would ask him time and again if he was okay and he would nod and carry on. He did not want to be obligated to me in any way, just a much as I did not want to be obligated to pick up any more of his broken pieces. I asked him the questions, but I didn’t really want him to tell me about what wasn’t going right for him. So I asked the questions, but then I argued with him that he should not be sitting down when he was packaging because it slowed production. He should not take frequent breaks because it was a poor example for the rest of the crew. I criticized everything that he did that interfered with my precious production, but I did not criticize the fact that his words were saying one thing and his body was saying another.

Soon enough, the bad back that he had complained about began to be unbearable for him. He would be laying on the floor at work while making an appointment with the chiropractor at the same time. He asked to leave early and come in late a couple of times a week, in order to get treatment and massage. I would ask him how it was working and some days he would have relief but most days he would nod his head back and forth and say it only worked for a little while. After several weeks of this, he began to noticeably shake from the increasing pain. He would lay on the floor in an attempt to get relief from standing or sitting. He didn’t have a primary physician and didn’t know where else to turn after it became apparent that the chiropractor was not able to help him. I helped him make an appointment with an urgent care clinic, in hopes of getting a muscle relaxer to ease the pain. They saw him, they prescribed things that wouldn’t help, and then he was back at square one again on the floor. We ran in circles around him at work, trying to give him the dignity of keeping his job and earning his paycheck, but still needing to cover his shifts because he was unable to stand up.

Finally, on a Saturday morning when we were all meeting up to do some expansion work at the shop, he told me that he needed to go to the emergency room. The kids were with us because they were supposed to be going home with him for a weekend visit. Instead, we all drove to the local hospital to get him help. He said it had been three days that he was unable to eat or drink anything. When he told the urgent clinic this, they thought he meant he was throwing up everything he ate. As it turned out, he wasn’t eating anything at all. Nothing was going past the middle of his esophagus. He would force swallow a drink to get it down, and it was coming right back up without ever reaching his stomach. Dysphagia, they call it. I call it a blessing in disguise.

It was this emergency room visit that I began to see undeniably and unequivocally that he was in serious trouble. I saw his frailty, his sheer suffering and his imminent mortality. As this 6’6″ man lay helpless on a gurney in a gown that showed the perfect outline of his deteriorating body and the extensive atrophy in his long, pale legs, my heart leapt out of my chest in protest and disbelief – even though my eyes could not yet make sense of what they were seeing.

~

I left that Saturday night to take the kids home. We lived almost an hour out west and it was a long drive for me at the end of a long day. Because the hospital we went to did not have a GI doctor on staff for the weekend, they wound up transferring him to another hospital a couple of hours after I left. Before I was able to get back to see him on Sunday, he was discharged from hospital number two. They had performed an endoscopy the night before and found a piece of chicken in his throat. His esophagus had tightened up leaving such a tiny passageway that a three centimeter piece of boneless chicken was enough to cause a blockage. It was too big to go down and it covered the passageway so that other food and drink could not get around it. The most unbelievable part was that he did not feel anything in his throat. It doesn’t seem possible, but sure enough the pictures of the blockage proved otherwise.

He was ultimately discharged with three pages of follow-up visit recommendations, information on how to access the online portal for his medical records, and several summaries about the importance of quitting smoking and alcohol abuse. The follow-up recommendations were for a visit with the gastroenterologist for the dysphagia, a new primary care clinic for regular checkups, a neurologist for the back pain, and an oncologist for the nodule they found in his right lung and the extensive metastatic bone lesions throughout his skeleton.

He returned to work the following Tuesday. He had taken Monday off to collect himself because it was clear he had been through the ringer. I remember speaking to him on the phone Sunday afternoon about what they told him before they let him go. He didn’t have any idea of how much trouble he was in. He thought that with the chicken removed, everything would be back in order. It wasn’t until I saw his discharge papers that I realized there were physical test results to back up the fears that I had in the emergency room Saturday night. What I didn’t understand then and I don’t understand to this day, is how they let him go home without impressing upon him the evidence that they found in his X-rays and the importance of his seeing an oncologist. They would have also needed to explain to him what an oncologist is and what they treat. Cancer was not even remotely on his radar when he left the hospital. He had no idea of what they knew and didn’t even know he was holding the information in his hand.

~

After reading his discharge papers, the only thing I knew for sure was that he was in serious trouble and he was going to need help.

he really was not able to navigate any of this by himself at all. When he first started getting checked out, it seemed like he could handle it. The day we went in for his biopsy results marked the first day I noticed he seemed a little confused. I assumed it was because of the medication he was on, as we were trying to find just the right dosage to get him out of the excruciating back pain he was suffering from. Because of tight restrictions on controlled substances, his prescription was not filled the way he expected, and instead of taking 90 mg of morphine per day, he was accidentally taking 120 mg. It was several days later before I realized this, because I did not see him every day and his one word answers did not allude to the fact that he was getting mixed up. When I finally realized what was going on, maybe three days later, I attributed his confusion to his medication and tried to help him keep track of his dosing better. I bought him a pill container with AM and PM dosing for each day of the week. I cleaned his house and gave him a dedicated spot for his medication. I also started giving him rides, so that he would not need to drive.

After two days of readjusting his medication and his still not becoming oriented, I was getting concerned. Then his feet and calves began to swell. I assumed that this was all related to the Morphine, but thankfully I was able to get him in to see his primary doctor. If ever there was a doctor that truly wanted to make a difference in somebody’s life, this may well have been the one. She was simply known as Dr. P, as her long Russian name was not easy to pronounce. But she affectionately asked this 6’6″ mountain man each and every question she needed him to answer, in order to make a determination. She showed no sign of frustration, hurry or impatience. She listened to each of his answers and she listened to mine, as well. Finally, she determined that two days was not an inordinate amount of time to not be oriented after heavy doses of morphine necessarily, but just in case we would draw some blood work and see what that showed us. She put the orders in for the complete blood work and for ultrasound evaluation of his legs. The ultrasound showed extensive blood clotting in both calves and within 24 hours, she called to tell me his bloodwork was showing signs of kidney failure and that he needed to get to the emergency room right away.