OOK

It all happened so quickly. We had just been visiting my mom and stepfather, Gary, in mid-April, and then a week later, we learned that my stepfather (also my kidney recipient) had stage-4 squamous cell skin cancer that had made its way throughout his body, to his lungs, lymph nodes, and other parts of his abdomen. We knew during our visit that he had a strange growth on his neck and was feeling weaker than usual. But we didn’t know how bad it was. He had had many small skin cancer growths removed over the years, which were caused by the anti-rejection drugs he was taking as an organ recipient. He always made it sound trivial like it wasn’t much to worry about. And I truly do think his dermatologist was keeping it under control all those years.

Unfortunately, now, in his 80s, his compromised immune system had made his body fertile ground for the cancer. We had no idea when we visited that things were so bad. Neither did he at that time, although one wonders how bad he had been feeling.

Three weeks after his diagnosis, he was admitted to the hospital due to low oxygen and shortness of breath. We headed back down to Atlanta to see him, but also to help care for my mother. For some time now, Gary had been doing more and more for her. He had been doing the shopping, cooking, cleaning, driving, what have you. But we had no real idea just how much Gary had been doing to take care of her. Once he was not there to care for her, things started to go downhill. We learned that one night after he was admitted to the hospital and she was home all alone, she fell getting up from her recliner to go to bed. She spent about two hours trying to get up on her own and was finally able to crawl back into the recliner and spend the night there. She was already someone who eats like a bird, and now that no one was there to fix her food and bring it to her, she wasn’t eating or drinking much. So, by the time my husband and I got there, my sisters were starting to care for her like she was in a home-hospital, while my stepfather was in a real hospital. She seemed to check out of life in a way. It was as if she couldn’t cope with what was happening to him, so she just gave up on everything.

I could write another blog about what it was like being a caretaker for my mother in the ensuing weeks, but this post is about my stepfather. So, I’ll focus on him for now…

After he had been in the hospital for about a week, it was clear that the cancer was taking over. He had been this person trying to hold everything together. But now, he was at the mercy of this disease. We had to have tough conversations about what his wishes were and whether he had an advance directive and so forth. His brothers came down from Connecticut, and one of his daughters also started camping out at the hospital with him, interspersed with visits from me, my husband, my aunt, and my sisters (his other stepdaughters). We would take Mom to the hospital and let her sit with him when possible. Of course, it was ridiculously cold in the hospital, and she had to sit in an uncomfortable wheelchair.

A little over two weeks after he went into the hospital, he elected to go home for home hospice. This was a major step because I think that through the fog of it all, he had been hoping the doctors could do something about the cancer. At times, it seemed that he knew it was futile, but at other times, he seemed to be holding out hope. In part, this was because one doctor wanted to do chemo, but his daughter and others thought it would just be torture for him (more on that later). In the end, however, it was decided that he would come home and have hospice care there.

Now, I have to say that we were all naïve about what home hospice meant. It sounded good. He’d be able to be in his own home instead of another hospital-like setting. Mom could be there with him. Nurses would come in twice a week (or more, if needed) and focus on keeping him comfortable.

All of that did happen. And we were grateful. But in between nurse visits, my sisters and I had to be the nurses, which we didn’t know how to do. And we were effectively taking care of two people – my mom and my stepdad. Caring for my mom and trying to make sure she would eat, drink, and not fall trying to get from one place to another, had already worn us all out. We would take shifts as much as we could – to give each other a break. But I was the only one staying at her house full-time. And there wasn’t a lot of sleep happening.

When Gary came home, we all went into crisis mode and were ordering things on Amazon left and right – to turn the home into a hospital. We got the drinking cups with straws like they had at the hospital, and bought all kinds of bed pads, and night gowns and special sheets for the hospital bed. We were brainstorming all the soft foods we could prepare for people with dentures and difficulty swallowing. We now had two sets of medication protocols to follow – one for my mom and one for my stepdad. We ordered “call button” type devices that Mom or Gary could ring to tell us they needed something. We got a baby monitor with a camera – so we could watch them from another room. My sister Michelle and I figured out how we could move furniture and other things around and then push my stepfather over by the window, so he could look out at the lake behind their house. Then, my brother-in-law figured out a way to run the TV cable so that he could set up a small TV where Gary could see it from his bed.

And then, a week after he had come home for hospice, he died.

It was like we had all been running a race to get him the best possible setup. And when we got to the finish line, instead of feeling accomplishment, we just had the recognition that we no longer needed any of it.

In the space of a week, we had transformed the house into a hospital, and we had learned how to use things like “pull sheets” to reposition him in the bed. We learned to give him a “bed bath,” empty his catheter receptacle, check his oxygen level, and give him his pills in spoonfuls of ice cream so he could swallow them. The hardest part was wrapping our heads around the fact that the idea wasn’t to help him get better; it was just to keep him comfortable. And, in the end, my sister Renee and I had to be the ones to administer morphine and lorazepam to him just before he died. It was the humane thing to do, but it was also horrifying. It went against your instincts. You didn’t want to have him lying there suffering, and yet, the idea of letting someone die just goes against your instincts.

For me, it is taking a long time to process it all. I gave him a kidney to help him stay alive 11 years ago. And now, I was giving him morphine and essentially watching that kidney shut down along with other bodily functions. There was no longer much urine in his catheter receptacle to empty. My sister Renee and I had been taking shifts, administering the pain medication throughout the night. We were just walking back into the bedroom that morning to reposition him in the bed, and I looked over and could see he was no longer breathing.

It was hard to lose him after all that. And it was hard to tell Mom what had just happened. It was also hard because I had to think about the fact that if I hadn’t donated a kidney to him, he wouldn’t have had to take drugs that gave him the cancer. Ok, that probably sounds ridiculous, right? He had 11 years before the cancer. But it’s still something that runs through your mind. He had to be on stronger anti-rejection drugs because I was not a blood relative. I have to wonder whether—if I hadn’t volunteered to donate—one of his “real” kids (he has three daughters and a son) might have come forward. It’s silly, I know. Why torture yourself with such thoughts?

It was sort of weird that I donated and they did not. I did think about that at the time. I felt invincible, and willing. It was something I could do for someone – just because I had a kidney. I practically didn’t have to do anything at all – but have a kidney. I was so grateful that I could do this thing. But at the same time, I am much closer to my “real” dad than I was to Gary. My real dad isn’t as outgoing and emotive as Gary (two things that I think made Gary a better match for my Mom). But my real dad has a tenderness beneath his hard exterior that I’ve come to see more clearly over the years. And he has a funny dad-joke sense of humor that I love. Obviously, there is a kinship that you have with a blood relative that you can’t explain. And, I definitely have that more with my real dad than I did with Gary.  When my real dad went through colon cancer, I sure wished I could have donated a colon to him! But, luckily, he has taken all of that in stride, and you would never know he went through that – because he is so strong on the outside. My dad has a resilience and incredible vigor that I hope I can emulate as I grow older. This whole experience has made me want to be intentional about how I age and be more like my dad.

Getting back to my stepdad, it is true that his “real” kids were mostly estranged from him for one reason or another in the end. He had been such a “family is everything” type of person most of his life. And the house is full of family photos and photos of large family gatherings. But, in the end, there was just one daughter who was close to him (aside from me and my sisters). I thought about what might have happened if she had donated a kidney to him instead of me.

As it happens, there may have been a reason why it was good that I donated instead of her. She recently fought her own battle with cancer. She had surgery and then started chemo. But the chemo drugs were really hard on her. I will probably get the details wrong if I try to recount what she told me about it. But I do remember that she said it was like her kidneys were shutting down at one point, and fluid began to build up in her system. It was so horrible that she chose to go off the chemo and stop treatment. She felt like the chemo was killing her. (This was why she felt strongly that Gary should not go through the chemo if there was no hope that it would cure him.) She later had a scan that she said showed the surgery had done enough to remove the cancer, and she didn’t need the chemo after all. So, maybe it was good that she had both of her kidneys when she went through that treatment and had not donated one of them to her dad. She probably needed both of them to get through that terrible situation. Obviously, we can never know. But it’s funny how you try to think these things through and have it all make sense.

The whole experience of Gary’s death was not what I would have wanted. I would have wanted a touching end to this journey. I tried to say some meaningful things to him before he died, but I failed miserably. None of it went like you see in the movies. Instead, we were just humans, dealing with a situation we were thrown into – trying to react the best way we could. His whole situation (and Mom’s) was just coming at us, and we were trying to keep all the balls in the air. I’d love to give you a poetic end to this blog, but I don’t have one.

With regard to my mom and stepdad, I wish I would have seen these last few years – how they were aging more than I wanted to admit. My mom was able to do less and less, but my stepdad was taking such good care of her, that we didn’t get alarmed. Then, he ended up being in worse shape than we realized, and we couldn’t do anything for him before it was too late. If I have any words of wisdom for anyone who will listen, I would say this:

Don’t be too standoffish as your parents get older. Your instinct is to give them their privacy and assume they are “the adults” and have it together more than you do – just like they have all your life. But at some point, unless they tell you how they are doing on their own, you need to probe deeper, ask more questions, and check in with them more often. Maybe that’s true with anyone in your life. People are not always as okay as we want to assume.

I suppose I will have more to say once I’ve had more time to reflect on the last few months. As you might expect, this has been the hardest chapter in my kidney donor story. Thanks for reading along. Perhaps sharing my story is helpful to someone, even if it’s as imperfect as any human story ever is.

"If you're coming up for air, breathing in
You know I'll be there when you first begin
And when everybody's telling us we
Have no time, we'll prove 'em wrong again
'Cause yeah, it might be all that you get
Yeah, I guess this might well be it
But heaven knows I've tried
And heaven knows I've tried"
--Marcus Mumford & Tom Howe