Happy Thanksgiving! I hope you had a relaxing holiday in whatever form it took. It was just my mom, Kyle, and me at dinner tonight, socially-distanced, me wearing a mask other than when eating. My mom’s house is the usual gathering spot, and we typically have a number of friends over as well. The last time we had such a small group was in 2007, when it was just my mother. me, and my dog Petey who had fallen down a 60-foot cliff a few weeks before. He was a broken mess.
I missed seeing everyone today but I have to admit I wasn’t up to a big gathering this year. I did make the dressing for dinner, desserts for three families, and I did get Thanksgiving dinner made for my friend. We dropped off her food last night, and she called me today to tell me that she made plates for three elderly people in her circle from the food we delivered. That was nice to know.
I was released from the hospital Monday, and it wasn’t until after I got home that I realized how much of trauma this was. I can’t believe how bad it got, and how quickly. Looking back on it now, it was actually pretty scary. I wasn’t even really able to think clearly anymore. Even to do something incredibly simple, I’d have to think out every step it would take to complete the task—and usually that was as far as it got. I was even having difficulty talking. I was a mess. It’s hard to believe that was all just a little over a week ago.
I’ve lost nearly 45 pounds of fluid in this past week. Forty-five freakin’ pounds. Can you believe that? I still have a minimal amount of swelling but at least I can get off the couch now without too much effort. I feel like a completely different person. But not anywhere near close to normal yet.
I am absolutely wiped out. I have no energy and absolutely no strength. I mean none. My body really went through some major distress. I’m going to have to start my own little physical therapy routine tomorrow so I can start back to work next week.
I finally got a full night’s sleep last night for the first time in weeks. That felt so awesome but I was so shaky today. I’m going to assume that is a leftover from the infusion of steroids. It’s been almost a week but 1500 ml of Solu-medrol is a lot. I’m hoping that dissipates soon as that will have a big effect on my ability to do my job. And it’s just a really icky feeling.
The conjunctivae of my eyes are still swollen, and today all the blood vessels were broken in my right eye. What’s up with that? I messaged the doctor but she’s off this week—although she did call me yesterday to see how I was doing. Unfortunately, I missed her call.
Next week I start this new chemo drug called bortezomib (or Velcade). I guess it will be weekly, or nearly weekly, for three months. It’s just a shot, not an infusion, so it will be a quick in and out, much like my Aranesp injections. (I’m hoping I can coordinate those on the same day when possible.) This isn’t the typical plan for this disease but I’m tired of fighting it. If my nephrologist is signing off on it, then fine with me. What do I know? I’m just the patient. I can only do so much. My PA nephrologist said that if this drug doesn’t work, there is one last one we can try but that insurance won’t cover it until we try this one first. Okie dokie then.
I have to admit that for the past couple of months I haven’t been paying attention to my lab and test results. It was just too depressing to see all those numbers tanking, and there was nothing I could do about it. I just needed a break. Trust me, before I was all over this info…putting everything into a spreadsheet, following this value, questioning that, googling what this downward spiral meant. It was getting overwhelming. So the last I knew, my GRF was in the low teens (bad) and my creatinine was nearing 3 (bad).
As the fluid came off, the expectation was that my creatinine would increase (again, not good. High creatinine = poorer kidney function) because it likely would have been artificially diluted by all the fluid in my system. But miracle upon miracle, every day my creatinine dropped. DROPPED! By the time of my discharge it was 1.6. We were all pretty stunned. My GFR had improved to 21—not great by any stretch, but better than expected.
The day of my discharge, my local doctor’s partner dropped in as he was on call that day. He said he was in agreement with the plan for the new chemo drug, and that this particular drug does seem to be one that “targets” the particular plasma cell that’s causing the issues with my kidneys. And he said this phrase, which I was encouraged by but don’t want to put too much hope in, “It seems like your kidneys are coming back.” Again, we’re at 21% function, not 90%. But better than hearing the alternative, I guess. I know my local doctor isn’t embracing the plan. I understand and respect her opinion. But again, if the chemo regimen isn’t too rough and if it gives me a chance, I gotta go for it. And even the next drug too, if that’s what it takes.
I still plan to meet with the dialysis nurse as soon as I can find the time. I had to postpone my initial appointment since I was so sick. Maybe I won’t need the info on peritoneal dialysis but I’d rather have it than not.
This was kind of funny… on Thursday when I was in the hospital, I had a video visit with the PA doc. I asked her at that time if she had heard back from the local nephrologist regarding the Solu-medrol but she had not. I was pretty annoyed by this because it was been several days, and at this point I was really suffering. At times there just doesn’t seem to be any sense of urgency with her: it took several days for her office to send the biopsy results to the PA doc, the lack of return call regarding the steroids, etc. I was not happy about this; neither was Dr. A. She said the hematologist was great to work with, and HE was the one who arranged for the steroid infusion. So as we’re in the middle of bashing the local nephrologist, who walks in the room? Yeah, the local nephrologist. Whoops. It was as if we conjured her up.
But it was actually a good thing, as they were finally able to “meet” at least virtually, and before I knew it, and without much input from me (which was fine), they had confirmed the plan for the infusion, the steroid taper down, and the chemo plan for next week. Maybe this will spur the local doc to work more hand in hand with the PA doc. Or maybe it won’t. Who knows. I just know that trying to manage all this was more than I was able to handle last week so I was glad that all I had to do was let them talk.
This has been a little all over the place tonight so I’m going to throw in a couple other random things:
1. It took me a day to be able to gather the energy to get to the ER. The night before I started making a list in my phone of things to take. This was actually really helpful, and although I certainly hope this doesn’t become a regular thing, I’m keeping the list in my phone. It’s one thing if you have to call 911 and just have to GO, but if you’re lucky enough to not be at death’s door, having a list is handy. Things you might not think of: a notebook and pen. Things I forgot: earplugs and gum. (They’re now on the list.)
2. If you know you’re going to be admitted to the hospital, ask them to put the IV in your hand instead of the inside of your elbow. It is SO much more comfortable. What I should have done though is ask for it my left hand instead of the right, but even in the right, it was so much better.
Low, Low, Low 