Because nausea is horrible, and for most people, worse than pain. There are people out there with chronic pain who will disagree with me, and that’s okay. That’s their experience. I don’t know that it’s even valid to compare the two. My experience is from being a nurse, working with patients, and now being one. Given a choice, I’ll take pain over nausea.
People have been asking me about the pain a lot. Because, well, cracked ribs, restructured chest cavity, rebar tied to my ribs, etc. I think the thing that bothered me about the pain was the exhaustion that came with it…the pain itself, yes, sucked. But it’s like…the pain syndrome of being so very tired, being unable to do the damned laundry, having to sleep so much more. There’d be sharp stabbing feeling of something telling me to never move that way ever again… and then a fear of how I move. The fear and the exhaustion part bothered me more.
Nausea has the worst parts of pain, but without pain to blame it on. Plus, the bonus of occasionally throwing up. Which is then painful. It’s the lethargy, that feeling that I’m a thirtysomething (i.e. “past my prime”) year old wealthy Victorian lady who just lingers on a setee, back of my hand to my forehead, with nothing to do. Maybe. You can’t do *anything* when you’re nauseated. Pain can occasionally sharpen your thinking…nausea dulls it.
You don’t ever feel WELL when you’re on high octane antibiotics. And don’t get me wrong, Ancef was relatively kind to me. I did not want Vancomycin. No. Ancef I got used to. So I gave it three times a day. I had to get up at 6am for the first dose, and then 2pm, then 10pm. I was getting less sleep than I had, and my body didn’t like that much. The hour after I gave the injection was fairly useless. I was taking some form of probiotic every day. In a shake, or a cup of yogurt. It's a habit now, I'm still doing. (Of course, I'm still on antibiotics, just lower octane now.)
I went back to work sometime in that six weeks, working around that 2pm injection. I very often ended up injecting myself while driving to and from work, when I did short days.
Prior to my surgery and during this entire time, my friend and colleague, Katy, was going through significant medical stuff, too. Like, I shouldn't whine because holy crap, I'm so sorry that you're getting this in your world. She had a PICC at the same time. When we were both off, we were well enough to go hang out, and maybe walk some. It was weird, being two nurse old ladies with PICC lines, taking our IV antibiotics, and commiserating.
Katy agreed with me that the PICC you feel all the time, where it goes into the skin. As a nurse, I wasn't aware of that. I thought people with PICCs would just get used to them and forget about it. Yeah, that never happens. I developed a tape allergy, which is, you know, fun. I had blisters. It's faded out now.
The photo below is not me. It is a random photo from the internet. I had a single lumen.
Several total strangers felt the need to tell me to keep fighting, and that I look great. Um. Kay. Thanks? It felt invasive to have strangers ask what's wrong with me. But I recognize that these people were very often cancer survivors themselves, and they just don’t know that PICCs (Peripherally Inserted Central Catheters) are not used for chemo. Ports are. They saw that it’s an IV, and assumed. I know that from their hearts they wanted to show me kindness and compassion. People with cancer have it far harder than anything I’ve done this year, and I don’t get to be a member of that club that deserves to be told I look good. I am in the Whiny Infected Person club. It’s far less admirable of a club. Nobody runs for that cause.
And I just didn’t wanna talk about it. Because what was there to talk about? Nausea is tedious. I don’t remember large chunks of that time, not because I was taking a lot of meds or sleeping (trust me; I was doing neither). It’s just that nausea can feel a little like depression in that time just passes with you not noticing much of anything happening. I wasn’t depressed. I just wanted it over with. I was really glad to go back to work, even if it was wiping me out.
Dr. Kristine is pretty awesome. At one point, she prescribed rifampin for me. Yeah, medical people, rifampin. Apparently, rifampin kills cooties that form slime layers. (“biofilm”) (whatever.) Rifampin also turns all your body fluids orange, with a faint odor. So I was really looking forward to that. I look so good in orange, and I wear white socks very often and my feet sweat. Fan. Tastic.
In good faith, I took the first two doses as prescribed, and woke up with my stomach on fire. And then it was 3 in the morning, and there was laying on the bathroom floor with my face pressed to porcelain, thanking the porcelain for being cold and neutral and nonjudgmental. If something like that’s going to happen to me, I should have had some significant fun hours prior to that.
So. I called Jocelyn, my neighbor nurse who works with Dr. Kristine, and asked her to please quote me in the triage message to Dr. Kristine and state, “Patient reports that rifampin is from hell.” From hell, Jos, make sure you tell her it’s From. Hell. Quote me. Can you ask her if there’s something else I can take instead?
Jos and Jackie, the two nurses over in ID that I know best have been really awesome throughout this thing.
Rifampin was stopped. We went with the Ancef for a few weeks, until I noticed the PICC site was bothering me more. The site was getting red, and Jos noticed it, too, the last Monday she changed the dressing. By Friday it was worse, and Dr. Kristine gave me the happy news that I could have the PICC out. Oh happy day!! I was singing in clinic. And there was some hopping, too. "I GET MY PICC OUT! I GET MY PICC OUT!"
Jos pulled it (and fibrin sheath with it), and the site did not look good. (Boy was I glad it was out when I saw that little fibrin clot.) I kept topical antibiotic on it for a few days, and it’s better now. I still have faint tape mark scars.
My chest Xrays continued to get better. The day the PICC was pulled, the radiologist said NO pleural effusions at ALL. woo! Woo! I could see my margins of my lungs to my diaphragm, totally clear. WOO! (I promise I’ll get imaging to upload.)
Now I’m on oral antibiotics. Moxifloxacin, daily. (I call it “moxy-floxy” because it’s fun to say.) (Jackie got my prior auth for that, saving me $400.) Dr. Kristine wants me on that for three months, until she gives me the M&M that is doxycycline. (Doxy does nothing for me.) I take moxy-floxy at night, because I discovered the hard way not to take it on an empty stomach in the morning. I don’t have any nausea now, and my energy level overall was getting much better.
Almost immediately after the Ancef was gone, I was able to do significantly more 10,000 step days. (I got a fitbit a few weeks after the surgery.) I was doing great. Felt stronger. My weight was stable, and very slowly and gently drifting down. This is how it should be. As of today, I’d like to drop three more pounds. Just three. Then my fitness isn’t about weight or fit of clothes…it’s about getting a stronger heart. Being able to get up in the mountains more. The important stuff.
So I was getting stronger.
And I needed to deal with that whole bone in my ventricle issue, which, you know, I’d been avoiding while I was Whiny Infected Person. It's time to stop with the delay stuff.
Mark had mentioned, several times over the weeks of the Ancef about what we’re gonna do about that whole bone shard thing. I wasn’t ready to deal with it, and he wasn’t pushing. He wasn’t the only one nudging, either. Jim, my pulmonologist, knew, too. So he was occasionally nudging me to send the imaging to the surgeon. I don't even remember who I told about it....not a lot of people. Part of me meant to, but ....just didn't get around to mentioning.
The week they pulled the PICC is when I put together a fat packet of my UCH history and physicals, discharge summaries, and all the imaging and sent it. I had several CXRs and most crucially, the two CT scans. The first from May 29, with my lungs like little floating deflated balloons in this container full of cootie-laced water, and the second from June 2, after three liters of that fluid was gone.
And that’s where I’m leaving off today. When I come back, we’ll be at July 15, when I reconnected with Mayo.