TLDR: I got home on Friday afternoon. No specific source for the blood clot was found, other than cancer and chemo. Chemo cycle 3 will happen as scheduled, Monday 3/25.

We left off with me waiting in the ER for my overnight room. Once we knew I was staying overnight, Jonathan and I came up with a plan for me to have someone with me as a second pair of eyes and ears, while also not leaving the kids alone overnight. Colette volunteered to stay with me. She liked the little adventure during my surgery stay, so it seemed doable. Well, emergency is different that planned uncomplicated surgery recovery. Not long after Jonathan left Colette to be my companion, I started to have a weird vision issue. Certain parts in my field of vision were blocked by a white flash that pulsated outwards. Vision changes after you just started blood thinners are quite alarming, however, I didn’t panic for my own good and for Colette’s. After alerting the nurse, I could tell this was going to be a bit much for Colette. I adore her willingness and desire to be there with me, and she is a great companion and nurturing spirit to have along with me in this journey, but this circumstance was too much to ask of her. As the nurse scheduled me for a stat head and neck CT scan, I scrambled to arrange for Colette to get back home with a friend who would stay overnight with the kids and for Jonathan to stay with me. Before my friend could arrive to grab Colette, I was already in CT. When I came out Colette was there to meet me as we made it to my room for the night.

Much to my dismay, it was a shared room. Spoiled yes. But also, I just feel so vulnerable on chemo, that sharing a room felt scary. Who knows what germs my roommate’s guests might bring? My roommate was a 93yr old woman who was gasping for air saying, “Am I dying?” She didn’t seem to be dying, but it wasn’t very encouraging for my own optimism about my own health. I’m going to save my shared room experience for another post, but it was quite a different perspective than my surgery recovery private room.

We had made the plan to have Jonathan join me for the night before we knew it was a shared room. Turns out hospital policy doesn’t allow an overnight visitor of the opposite sex when it’s a shared room. This is to protect the other patient, and I get it. However, it complicated the plan. The room was small, and there wasn’t a great place for anyone to really be with me through the night, so I began to psych myself up for a night on my own. My friend took Colette home, and she told me to call if I started to feel like I needed someone with me. I figured I’d just keep her or Jonathan up with texting through the night. She ended up returning and sitting in an uncomfortable chair keeping an eye on my while I slept for an hour and a half. We talked about many things, and we connected over our propensity to research everything. She was the perfect hospital companion noting that I was rubbing my temples because I had a headache and insisting that I ask for medication for it. She would see other things I would do indicating my discomfort that I just did mindlessly or without intention to address it with the nurses, and she spoke up for me when they came in or empowered me to do so. She was exactly what I needed. I had to try to let go of the guilt that she was staying up all night distracting me from anxious thoughts and advocating for me in the healthcare world that now necessitates someone to be a witness to your care. She did it with pleasure, and I know I would do the same. But it is such a sacrificial act, it was hard to accept. And I’m so grateful that she insisted.

The head and neck CT scan had come back clear. The next test scheduled was for the morning: an echocardiogram. After the echo, it was wait for the doctor to round to tell me what was next. I thought maybe they’d do some leg and arm scans to see if there was a DVT source for the clot. The night nurse told me that the doctors usually round between 6am and 12pm. The doctor I was assigned was not my primary or anyone from her practice doing rounds nor was it anyone from my City of Hope care team. It was someone who had no relationship with me that came up in a list of “oh, this doctor comes up when we look for doctors under her primary doctor’s associations.” I figured, “okay fine. that’s the way this works. but surely, they will consult my oncology doctor on next steps.” I am quite naive to how this all works, and that is not how it worked. This random doctor comes in at 2p.m., and he had obviously not even taken a precursory look at my chart. He asked me to recount what brought me in to the ER, which I thought, “annoying and redundant but there is a lot of redundancy in hospitals for safety.” When he asked me if I had done any travelling or anything that could have induced a blod clot, I bit my tongue, and I said, “Well other than having cancer and being in chemo, no.” Then he proceeded to ask me when I was diagnosed, etc… I’m sitting there thinking, “How am I supposed to trust this guy if he hasn’t even bothered to read even just the highlights of my chart before coming in here? Why is he asking ME what could have caused the blood clot? Isn’t that HIS job? Obviously he hasn’t reached out to my oncologist, so how am I supposed to trust that he is taking all things into account when coming up with my plan of care?” After I didn’t call him on his BS, he excused himself saying, “You can be discharged today as long as when I read your scans everything is clear.” That was the last I saw him or heard of him, but perhaps not the last he has heard of me….

Anyway, I am home. It’s 1:53a.m. on Monday morning. I was home on Friday afternoon by 5:00p.m. Currently, I am on blood thinners to prevent more clots from forming and to prevent the PE clot from getting bigger. I’m still feeling a bit unsure of what is normal to feel after being sent home with a pulmonary embolism, and what is a sign that things aren’t getting better or are getting worse. I was able to have a day of connecting with my family on Saturday and a restful Sunday preparing for chemo cycle 3.

I am not ready for cycle 3. Cycle 2 didn’t leave me with many feeling good or decent days. Day 1 of cycle 2 was rough with the neuropathy and tremors. I’m not looking forward to that feeling again. I am happy that I shouldn’t get the rash this time since I successfully titrated off my medication that was causing the issue. I’m just feeling generally less sure this time around with the complication of monitoring a PE in conjunction with chemo side effects. It’s hard to judge what is expected and what is necessary to report and get care. But here we go. I did not want to delay my chemo. The NP asked if I was okay going on as scheduled, and I said yes, I prefer not to delay. The data and research is for a specific schedule and best results were indicated using that schedule, so I’d like to stick to it as much as possible. Doing so will help me trust the process. The process continues in 7hrs.