"Let me 'splain....no, there is too much. Let me sum up." - Inigo Montoya
Tomorrow will be three weeks. I can’t believe tomorrow will be three weeks. How has so much time passed already. I also can’t believe that tomorrow will only be three weeks. How was it so recent.
Time has no meaning for me anymore. Weekdays and weekends are all the same, even if the events of the days are different. Last week and the week before I worked half-days in the morning, and it felt good to get up and do something productive. Then in the afternoons, at least for the week of the 11th, I would run errands or visit family or friends or otherwise busy myself with things to get ready for Jennie’s services. And then last Sunday, the day after all the services where I saw hundreds of people, I tested positive for COVID, so this past week was spent pretty much just sleeping or otherwise doing nothing around the house.
I don’t know where I’m going with this. I really have no idea. This is the definition of word vomit. I didn’t say anything at the services. What do you say? Jennie’s parents and sister all wrote things that were beautiful and touching, but I just had nothing. I still have nothing. I told some friends beforehand that I felt like I should say something, because it is my nature to want to fix things, and I should be able to say something that would make everyone feel better about this horrible situation. But they reminded me that, no, that’s not my job, and also even if it were that there’s no sentence or paragraph or thousand-word essay that will ever ‘fix’ this.
I wish there was. I wish I could.
So why am I writing this if I don’t know what to say. Valid point! I assure you it’s not just to read myself write. I haven’t felt much like writing at all lately, but then I haven’t felt much like doing anything, so if I’m going to start trying to do things again, why not make writing one of those things. I also want the people who’ve been following Jennie’s story through this blog to know that I’m still here, for whatever it’s worth. I also also know it’d been a while since she’d written about what was going on, so I thought I’d fill you in on some of the details of the last few months of Jennie’s life. That was a hard series of words to write. I also don’t know how much she would want me to share, but I want people to know what was happening. Maybe that will be the thing that helps make it easier? I have no idea. I do know that this is a lot, and it’s hard stuff. Maybe my sharing it will take some of it off of my shoulders.
Jennie talked in her last post about the quad-shot of radiation that was planned for the tumor that developed in her shoulder. She had that done, though she said it didn’t really feel like it did much of anything, and we would find out fairly quickly that that was the case. A week later she started on the new clinical trial for the overall cancer, which involved a combination of an oral chemotherapy drug that she took daily and an infusion treatment that she received every three weeks. The trial was done in three-week cycles, and midway into the second cycle Jennie’s bloodwork wasn’t looking so hot, which the doctor said was a possible side effect of the oral drug, so they had her stop taking it while they waited for her counts to get back to normal.
That took a while, unfortunately, which meant for a few weeks there she wasn’t receiving any treatment at all for her cancer. Given how aggressive it had been previously, in retrospect we should’ve known that was a very bad thing. At the time I don’t think either of us had any idea how quickly it would move, though.
Then, on June 9th/10th, this happened.
After we got the bad news about the tumor spread back in April, I remember we had a conversation with our oncologist about just How Bad it was, and also, for the first time, about what the end most likely looked like for Jennie. One of the scenarios that she mentioned was an uncontrolled tumor bleed, and I specifically remember her saying that that particular scenario would be especially hard on the loved ones.
Seeing Jennie that night, sitting on the floor of the bathroom, blood in the sink and the trash can and on the floor, I thought that was it and she was going to die. Even when we went to the ER and she was talking and joking and the bleeding had for the most part stopped, I was still absolutely terrified. I was in a state of terror for days - when the ER doctors told me she’d almost died when they intubated her as a way to protect her airway should she start to bleed again, and as we waited for them to be able to do the procedure they had planned to make sure she didn’t have any further bleeds. It was the most stressful week of my life, and I know it was no picnic for Jennie, either, as she was forced into making decisions about what she wanted to do and knowing that the decisions that would ultimately keep her alive were also sure to make her miserable.
We went home from the hospital after a week-and-a-half there, around June 21st. I went back to being a full-time caregiver, creating charts to track all of the meds Jennie was receiving. Jennie couldn’t speak anymore - the procedure they’d done had immobilized her tongue, and they’d also reinserted a tracheostomy tube into her neck as a precaution against further bleeds - and she’d also, while in the hospital, developed pain and weakness in her left arm and hand, most likely due to the tumor in her shoulder. She could use her phone to text and post on social media, but she couldn’t type, and even the texting/posting was hard with just one hand. She had a board she could use to write, which she used to communicate with people in-person, but that was basically all she could do. As isolated as I know she felt a lot of the time before that, being unable to speak or type made it so much worse, and I hate knowing that she spent so much time before the end feeling trapped in her own body.
For the next week we had family and friends coming over pretty regularly, bringing us groceries and just generally visiting. I didn’t feel comfortable leaving Jennie alone, and she didn’t feel comfortable being alone, so her family would come over to spend time with her while I went out to run errands. Visits from people were typically followed by exhaustion, mental and physical and emotional, and one day after her family had left Jennie told me she felt like she didn’t have much time left. I tried to comfort her, but it was hard when in the back of my mind I felt the same way. How do you make the person you love the most in the world feel better when you both know things are only going to get worse?
On the afternoon of June 29th, Jennie started coughing up blood. Not a ton, but I figured any amount was bad. Our at-home nurse had come earlier that day and hadn’t mentioned anything abnormal, and in fact said her lungs sounded really strong. We emailed our team at UC to tell them about it, and they suggested coming to the ER, so I drove us down to Cincinnati as fast as I could, once again terrified, Jennie telling me to both slow down and calm down. In the ER our ENT doctor came to see us and said it looked like Jennie had a pneumonia, caused by the tumor in her lung. They started her on antibiotics, and after a CT scan they started talking about doing a procedure to put a stent into her lung that would reconnect the area cut off by the tumor with her main airway, which would hopefully prevent any further pneumonias.
From the ER we went to a regular in-patient room, where they monitored her and continued administering antibiotics for the pneumonia and pain meds for her arm. I was able to stay with her overnight in that room, and she seemed to be doing okay. Then the second night in that room, early morning on July 1st, Jennie said she was having trouble breathing. I knew just calling the nurse wouldn’t get anyone there fast enough - they were short-staffed and slow to respond as a result - so I hit the red emergency button on the wall, and two-dozen people descended on the room within less than a minute. Jennie was immediately moved from the regular room into the ICU, where she was hooked to a ventilator to help get her breathing stabilized again. After a few hours everything looked back to normal, though they left her connected to the ventilator until the next day just to be safe. She was so happy to be disconnected from the vent that day - the machine put pressure on her chest while she breathed and it was really uncomfortable. She was breathing normally and the next day, July 2nd, they moved her into a stepdown room, which is like the ICU but with fewer machines and quieter rooms.
While Jennie was in the ICU and, later, the stepdown room, I wasn’t able to stay overnight with her. Visiting hours were strict in those units, from noon to 6PM, though I was a few times able to get the nurse to let me stay until shift-change at 7PM. This was nerve-racking, but my parents put me up in a hotel nearby so I could be close in case anything happened, and I was able to call every night and every morning to check on her before I was able to get in to see her. That didn’t necessarily make leaving her every night easier, but it gave me a little bit of peace of mind.
We stayed in the stepdown room for a few days, basically in anticipation of them doing the stent procedure. Things were pretty normal in that room - Jennie rested and had visitors for a few hours every day, and otherwise there were no major changes. On July 4th, we watched Star Wars movies on TV. Jennie and I talked about TV and movies we wanted to watch, and shows we saw ads for that we weren’t that interested in anymore. I bought a ticket for a virtual event we were looking forward to at the beginning of August. It was the most normal day you can have in the hospital. I left at 7PM for my hotel.
Later that evening Jennie texted me to tell me she’d been having some shortness of breath, and that the doctors were giving her some anxiety meds (this had helped before, and her anxiety had been high the whole time we’d been there), and she said that seemed to help. Then, around 1AM, I got a call from her doctor that Jennie’s oxygen levels had dropped and they were hooking her back up to the ventilator. They were also going to do another CT scan to see if anything had changed. I asked if I needed to rush back immediately, and the doctor said he didn’t think so, but he would call me once they had her CT results.
I didn’t hear anything until around 6:30AM, when I got a call from another of Jennie’s doctors, who told me her blood pressure had dropped overnight, so she was being moved from stepdown back into the ICU while they got her BP under control. It again didn’t sound like they were overly concerned, but they were going to let me in early to be with her, so I showered before heading back to the hospital around 7AM on July 5th.
I think I shared most of what happened that day on Facebook, but compared to how normal July 4th had been, everything happened very fast. The CT scan results came back and showed that the tumor in her lung had grown even compared to the scan from a few days prior, and was now blocking her pulmonary artery, meaning she wasn’t getting any oxygen to her blood in that lung. By that afternoon it was apparent that the only thing keeping her breathing was the ventilator. Jennie had been okay being hooked to the vent when it was temporary, but never wanted to be dependent on machines to keep her alive permanently. The decision was made to take her off of the ventilator and let nature takes it course. She died at 8:15 PM, with me and her parents and sister in the room with her. She was peaceful and quiet and as comfortable as humanly possible.
What I don’t think I mentioned before is how many people came to see Jennie that day. It was so many people. Her parents and sister and I were there every day while she was in the hospital, but on the last day it was basically a parade of family and friends and loved ones. There was a limit on visitors in the ICU to two people at a time, so people were cycling in and out of her room all day. She slept through a lot of it, until toward the end of the day, before she was taken off the vent. The chaplain had everyone come into her room at once and form a circle around her, and everyone got a chance to say thank you. Either thank you to a higher power for the gift of her, or thank you to her. She woke up in the middle of it and looked mildly freaked out, and rightfully so given the number of people all there staring at her. It was beautiful and powerful, and I’m so glad that she was awake to see how many people were there who loved her, and to know that it was just a fraction of the people who wanted to be there. I’m also thankful that I got multiple opportunities to thank her for letting me be a part of her life.
This has been extremely difficult to write out. It was only three weeks ago, and the memory - and all the feeling associated with it - is still incredibly fresh in my mind. I don’t know if reading this is helpful for anyone. I still can’t believe it’s over. I don’t know how to process it.
A thing I do know, though, is that Jennie didn’t want this to be our story, and so I’m going to do my damndest to make sure it’s not. Sure, cancer was a part of it, but there’s so much more to Jennie’s life and her story than this, and I want to tell you about all of it. I also need to figure out what my path forward is going to be. Some of it will be in my words, and some of it will probably be in other people’s words. And a lot of it will be in Jennie’s, whether it’s republishing old blog posts or putting up new stuff that she hadn’t gotten around to posting yet. I hope you’ll bear with me while I figure out what’s next.
And if this wasn’t helpful for you at all, I’ll just delete it. Jennie was such a good writer and I don’t want to clutter her site up with nonsense.