In the big picture, which is sometimes hard to see, it hasn’t been such a bad week. As far as we know, the cancer has not progressed, and I’m still alive. But who am I kidding? This has been a bad week. The week that makes you appreciate all the other weeks. If every day is good or great, even I, the dependable optimist, couldn’t categorize these days. Today, Wednesday, I can appreciate that the cancer probably hasn’t progressed and that I’m still alive, but there were more than a few times recently that my sole goal was not to stop breathing in the middle of the night. I am not being overly dramatic.
Besides the chocolate and great photos I brought back from the Arctic, I also brought a cold. It was a bummer, as I was just getting over being on the edge of sick for weeks. I haven’t been able to shake this low grade whatever-it-was. Well, whatever-it-was got worse, not a good thing when you don’t have air conditioning to filter the smoke from the wildfires nearby and you do have asthma. My first chest x-ray didn’t show much. Still, the doc gave me a Z-pack and said to take it if things got worse. So I went home and started taking it right away (of course). Still, Thursday night, I woke up and couldn’t breathe. As in literally could not get air in or out. As in respiratory arrest. I’ve choked on food twice in my life, and this was that, except this time I was all by myself. So I did the practical thing. I panicked. After what seemed like twenty minutes, but was more likely a few seconds, I could get a small sip of air in and talked myself off the ledge until I was breathing more than coughing and could get enough O2 to use my rescue inhaler. I’ve never actually used my rescue inhaler as a rescue inhaler til then. I got a few chances to do that this week. With my heart pounding, afraid to lie back down, I debated whether I should A. Call an ambulance or B. Drive myself to the hospital. So I did C. Wait til the Urgent Care opened in the morning. I didn’t suffocate in the next few hours, which was a positive sign. But when I told the doctor what had happened and asked if I should have gone to the hospital, he said solemnly that breathing is very, very important. Before you shake your head and proclaim that I should have gone to the hospital, put yourself in my place. Would you REALLY have gotten in the car at 1 am and driven across town? Not for your kids or your spouse, but for yourself. Even the doctor hesitated when I asked if I should have come in. It’s easy to say afterward that “you should have done this and you should have done that.” But in the moment, when you are weighing what’s overly dramatic and what’s the conservative approach, it’s not that easy to make that call for yourself.
My new x-ray showed bilateral middle lobular pneumonia. Asthma + pneumonia = no bueno. I got a big shot of antibiotic in my hip and ten days of horse pills (more antibiotics). The doc said I’d feel better within 6-8 hours, which I did, but overall improvement is a bit like learning how to drive a clutch. Forward, back, forward a lot, back a lot. The next fish out of water episode I had was whilst volunteering at the National Ability Center barn with the horse therapy program. Now I know I can’t stay in the barn much more than an hour, but I still agreed to help with a 3-hour camp. We didn’t head out of the barn and on to the trails quickly enough for me, and I coughed until I couldn’t inhale. I had to wait four lifetimes for someone to take the lead to sweet Dill and had to go outside and sit for a bit before I could even drive home. It’s been an exciting week.
I know I’m improving because coughing doesn’t, well, take my breath away, but the smoke is still a problem. I’ve been sleeping at Patrick’s house when the wind comes from the South because he has a/c and he’s in Europe and doesn’t mind. I have a little lottery to see which cat gets to come sleep in air conditioning with me. They’re hot, too. Linus went first, but totally didn’t appreciate it. He smashed his fuzzy self against me under the covers until we were both overheated. I think Lucy will take better advantage of being in artificially cooled air for a night.
Because the week wasn’t dramatic enough, I felt a brand new little bump on the outside of my rib. It’s about the side of a piece of Israeli couscous, the bigger one(You laugh, but my PA at the NIH took a look at it and was impressed at my quite accurate analogy). That launched a flurry of emails to my team at the NIH and reviews of http://www.clnicaltrial.govI sent an email to Dr Rajan, telling him about what I was convinced was a new tumor since I’d never felt it before. He has always been great about emailing back on evenings and Sundays when I have Big Issues. Sure enough, he emailed back. He looked at my last CT image and found that the tumor HAD been there and WASN’T new and I DON’T have to find a new trial, which is a good thing because as of this moment in time, there’s not one.
So Wednesday finds me in the day hospital at the NIH, not getting my infusion. Those crazy whites that had decided Neulasta was like $4 beer and have been showing up en masse for months didn’t show up at this party. I need 1.5 ANC (mixture of white blood cells and new white blood cells), and I have .5. This isn’t just neutropenia, it’s a neutropenia PR (runners and triathletes get this!). Low as I’ve ever seen it. I’ve been fighting wearing a mask because of my cold, but now it looks like I’M the one who needs it to keep other people’s germs away. My reds are at the Hamptons, too, so I’m currently getting two units of blood, which always makes me feel better. (This is still so ghoulish and weird to me. But I like it.) What I’m not getting is my CRLX101 and my Olaparib. Dr Thomas is holding treatment this visit so my blood can get back with the program. I’ll come back in two weeks and we’ll try again. Of course, my port line wouldn’t work today either, so my nurse had to use TPA to try to get it to run fluids (didn’t work).. My non-infusion NIH visit was still ten hours.
Pelotonia is now 25 days away, and I can’t actually remember the last time I was on my road bike. I’ve dropped to 90 miles from 182, with an assist from the girls in the office. I won’t do it well, but I’ll get out there to soak up the miles and the positive energy. I am actually more determined than ever to help scientists and researchers find treatments so no one ever has to feel like I have for the last week or so. I would have been PISSED if it were pneumonia that took me out after all these years of beating the odds and this stupid rare cancer. I know I’m helping in the bigger fight by participating in a trial, both for myself and for others down the road. You can help arm the good guys in the fight, here
I have to say, it was still a good visit home to Maryland. Seeing family is great, being at sea level is super helpful, AND Taylor Swift just happened to bring her reputation stadium tour to Fedex Field last night. Because I have the coolest family, we watched from our box in perfect position. I knew her show would be big and amazing, and it was. Lots of catchy music, fireworks, lights, dancers, and some giant snakes. Just what I needed to remind me that I need to Shake it Off and move forward, relentlessly. #Defy #Breathingisimporant.