I’ve seen fire and I’ve seen rain. I’ve seen sunny days that I thought would never end. I’ve seen lonely times when I could not find a friend. But, I always thought that I’d see you again. -James Taylor, Fire and Rain
I wanted to start this out by saying that even though this is not fully my story to tell, I will be telling this story from my perspective, since I was very involved in the whole situation.
December 22nd, 2016. That date still sticks out to me. My dad called me and told me he was being admitted to the hospital. When I asked why, he told me he had leukemia. That day, the journey began.
I spent most of my preteen and teenage years convinced that this man was just some evil monster hell-bent on “ruining my life.” (Don’t most teens feel that way?) Plenty of petty arguments, tears, and slamming doors. Those were not fun years for him, I’m sure.
The older I got, the more I really enjoyed my father. We had a lot more in common than I’d ever realized, especially our sense of humor, it seems. Even in the way we think about and look at certain situations. I always loved math, to me it was the one thing that always made sense. There was always right and wrong answers, and at least one path to every solution. My dad told me probably at least a few times a month, “you should have been an engineer.” A high compliment coming from him, I believe. Plus we both enjoyed binge-watching Harry Potter while the rest of the family seemed pained by the amount of times we’ve seen them.
We developed quite a few traditions over the years. 6 AM Tuesday morning breakfast at our favorite diner, Blacklist and Harry Potter marathons, seeing whatever new movie was out that we enjoyed at our local IMAX theater (usually Marvel for me, Star Wars for him, though I grew to enjoy Star Wars), telling jokes with TERRIBLE pun punch lines, and playing cribbage on our summer vacations. He was not a very gracious winner, by the way.
My dad became my person. We would text funny things back and forth, and some things that I found exciting, he was the first I wanted to tell. If I needed help with just about anything, he was the first I went to. There were times where I’d just have a bad day, whether work or school, and I’d go home, and without saying anything, my dad would hug me. He had these magical hugs, that were so tight that it felt like he could hold you together while you fell apart. They were bear hugs, and I always felt safe, and much better after. That is one of the things I missed the most throughout this whole journey. I haven’t had one of those hugs in almost two years.
The end of 2016/beginning of 2017, my dad was admitted for his first rounds of chemo. He was in the hospital straight for the first couple of months, then about a week in for the few months following. In total, about 6 months in and out. It became almost routine. Work, hospital, sleep. I took a few “days off” a week, so I’d go in about 3 or so times a week. When he was feeling well, we’d talk, play some games, watch TV, things like that. There were a lot of days where he slept most of the time I was there. It was an anxiety spike when I got any sort of illness, be it a cold or the stomach bug (which I did get at one point while he was in), because I was not allowed to come and visit. Any illness and one is not able to visit the hospital.
Then, the happy news, remission. The goal was for 2 years remission. Dad made it about 6 months into that before they found that the leukemia had come back. January of this year he went back in. He decided that his next step in treatment would be a bone marrow transplant. It is a very interesting, yet terrifying thing. You are replacing your own immune system with someone else’s. Your blood type even changes to the donor’s type. Odd, yet interesting. End of March was when that occurred, and the first week of April was a struggle for me (though much more for him). That month had a LOT going on, and there were quite a few side effects from the transplant, and some Graft vs Host did show, but they look for it as a sign of the graft starting to take.
Luckily it was a week break from work at that time, and I was dog sitting, so I was able to be there most of the week. It settled my anxiety, just being able to be there and see him. Not that the hospital was a very exciting place to be. The staff there was amazing, so many kind, caring people. I’d play games on my phone, watch YouTube, play cards with my mom, color, watch TV, various things to pass the time.
The couple months following truly feel like a blur, even though it’s all very recent. It was, again, various trips in and out of the hospital. My last day of work before summer (at the full time job), I had driven dad for his appointment, and he got admitted that day for acute kidney failure. That was absolutely terrifying-sounding. It, of course, sent me into quite a panic attack. Luckily, at that point, they were able to get his kidneys into better shape.
The next main stay that comes to my mind, again was “on my watch.” Dad had gotten C-diff, so when it came vacation time, I stayed home to watch my parents’ dog and take care of the house and pool. Dad stayed home with me, it was supposed to just be a few days, then I’d take him to meet up with the rest of the family. But, the antibiotics weren’t helping, so he got admitted. I stayed with him for as much of the days as I could, while still taking care of the dog and the pool. Graft vs Host disease had come into play.
If you don’t know what GVHD is, I will explain it the best I can (but of course, google is your friend). Basically it is when the new bone marrow (graft) sees the body (host) as “foreign” and does what the immune system is meant to do, and attacks the foreign body. It is a risk with bone marrow transplants. You are basically getting someone else’s immune system and hoping that it works with your body. They put you on a bunch of steroids and immunosuppressants, then I think slowly wean them off and let the “graft” take hold. But if it doesn’t, then the new immune system can attack some major vital organs, like liver, kidneys, skin, and stomach.
That stay was a bit longer of a stay. I think he was in for a few weeks. His return home was not very long at all, unfortunately. When he came home, we were told that any fall at all, he’d have to come in to the emergency room. His platelet count was so low, that any fall could result in internal bleeding without him knowing, if I remember correctly.
Friday, August 10th, I got a call at 5:30 in the morning. Dad had a minor fall, and could I please come take care of the dog. I immediately rushed over, to find multiple ambulances at the house. I stayed near the front of the house, dad was in the back of the house. I was doing my best to stay out of the way of the paramedics. As far as I know, my dad was already lying flat on the floor the whole time. While they were working on getting him on the stretcher, he had a small seizure. Which was not completely abnormal for him in life, but definitely seemed to startle the paramedics. They got him onto the stretcher and carted him out to the ambulance. Later that day, he was admitted to the ICU.
The next day, I went to visit him. It was an extremely jarring sight. Though I’d been warned, I was not fully equipped for what I walked into. He had a breathing tube in, though he could breathe on his own, it was for assistance. He had what seemed like twenty tubes, wires, and IVs all connected to him. He was pretty sedated, but he still was somewhat responsive, and could be woken. That, to me, was the hardest to see and deal with. When he was awake with a breathing tube in. I imagine it would be quite uncomfortable to be aware with it in, impeding your throat and mouth, yet assisting your breathing.
Toxic shock. That’s what the doctor said. He was in toxic shock. The GVHD was still going on as well. The fall was lucky in a way, because had it not happened, they would not have found it. They said that the next 48 hour were critical. His chance of coming home depended on if he responded well to all the antibiotics and if they could get the GVHD to stop.
Monday things seemed to look up a little. Things seemed to be improving, slowing down, responding. Tuesday, things seemed stable. By Wednesday/Thursday, things were starting to decline again. There were two main options at this point. One involved surgeries, which involved risks to him and his life. The other, stop care and let go.
My dad was preparing us for this since he got diagnosed, it seems. We knew that this was not how he wanted to live. Not attached to machines, not with one breathing for him. On Friday, my mom gave me the news that we were stopping care that weekend.
It’s a whole new level of pain, knowing that my worst fears for the past almost two years and come true. He was dying and there was nothing we could do. I cried, and I felt an impressive pain in my chest. I felt like a part of me was dying inside. So many things flashed through my mind at once. All the times I wished I’d listened to my dad closer about all the internet things he does, who was I going to ask obnoxious questions to while doing my taxes or figuring out the computer, who was I going to watch Blacklist with, who would I watch a Muppet Christmas Carol with, who would I tell my terrible jokes to, who would I get my bear hugs from, what about Tuesday breakfast? Then future things, if I ever get married, who is going to walk me down the aisle? What if I have kids? How can I do that without him? I turn 30 soon. What a major birthday, how do I celebrate without him?
My dad became my person who made me feel okay to be me. He made me feel centered, grounded. As different as I am, he made me feel fully connected to my whole family, even when I struggled. When he wasn’t at Sunday dinners for too long, I’d start to feel a slight disconnect, but when he came back, all felt whole. What will happen now?
Saturday, August 18th, was definitely the hardest day I’ve ever had. I got to the hospital first thing in the morning. With mom and I holding his hands, and my sisters by his feet, the doctors/nurses unhooked him from everything. They warned us beforehand, that when they take out the breathing tube, that the breaths can sound like a sort of “gargle,” like there is something in the lungs. To us, it just sounded like a gentle version of dad’s snoring. We had a little laugh at the sound.
Not long later, my father took his last breath. I felt like my heart stopped for a beat. Like I couldn’t get air for a moment. He was gone. Somehow it still didn’t feel totally real. We stayed by him for a bit longer, but soon after, it was time for us to go. Time for them to take him. It felt near impossible to break away, but I knew I had to.
I went back to my apartment for a few hours. I had full intentions on a nap, crying gives me MAJOR headaches; but instead I just felt numb. Later that afternoon/evening, we all (mom, sisters, and I) met up and my older sisters house for dinner. My niece is this amazing, warm, bright ray of sunshine, the only sort of silver lining to this day. With her, we smiled, played, laughed. Things felt like they might be okay for now. Every Sunday, I still feel that way with her.
It’s been just over three weeks. My best days are when I almost achieve this “numb” feeling. I still have “good” days, but they just do not feel whole. Being back at my full time job makes me feel a little bit “normal,” being around all the kids again. They really do just make everything better. The first day, I had one of my favorite kiddos (who said that? We don’t have favorites) nearly knocked the wind out of me running to give me a hug. It was the best hug I’d had in months. I’d missed it over the summer.
There are times when the smallest thing will catch me off guard, when I get an ache in my chest, when I feel like I can’t breathe. Something as simple as a song, or something will happen that I will go to text my dad about, and can’t. But other times, I almost feel numb towards it, and just go about my day. It’s a long process, and I can only take a little bit at a time. It’s too much to bear all at once.
Going out and doing things have been severely limited. Mostly I just go to work (which sometimes is a LARGE struggle with the part time job, I’ve refilled my Xanax for it), go to Sunday dinner (or other things at my parents’ house), go to the neighbors, or hang out at my apartment. Going to events or social gatherings currently do not hold my interest. I guess that’s a part of grief.
Throughout all of this, there is a Grey’s Anatomy quote that sticks in my head.
Christina: “There’s a club. The dead dads club. And you can’t be in it ’til you’re in it. You can try and understand, you can sympathize… But until you feel that loss… My dad died when I was nine. George, I’m really sorry you had to join the club.”
George: “I don’t know how to exist in a world where my dad doesn’t.”
Christina: “Yeah, that never really changes.
It is very hard to learn to exist in a world where my dad doesn’t. Especially as close as we were. It’s hard when I see an actor from a show we used to watch starring in a new one, and I reach for my phone only to drop it. It’s hard when I dream that he is still around and I wake up and he isn’t. It’s hard when I go to their house, and he isn’t there. Sometimes it’s hard to get out of bed in a world where he no longer is.
All we can do is keep breathing…