I am an idiot.
I fully expected I would be much further along than I am at present. Tomorrow will be two weeks since I was discharged from the hospital. Progress is incremental. I am still very weak, very tired, with little stamina. A shower wipes me out. I have a chair in the kitchen to use when I wash dishes. Part of that I’m sure is that I can’t count on sleeping at night. There’s no rhyme or reason as to when I will or won’t sleep. And I’m still pretty shaky. That also comes and goes.
I’m so thankful that I’m not working a full 40 hours any week this month. Last week I had two clinic dates, same this week. The following week will be a challenge because as of now I have three clinics and an overnight trip. (Is it wrong that I’m sort of hoping there’s another lockdown situation? Selfish, I know.) But maybe I’ll feel a little better by then.
Wednesday I had my first appointment for the chemotherapy shot of Velcade. When I saw the hematologist, I told him that I was disappointed I wasn’t feeling much better yet. He told me that I had been on the verge of going into congestive heart failure and that it would probably take me a couple of months before I felt back to normal. Wow. I really wasn’t aware of this. Yes, they told me I had an enlarged heart from the fluid—but they also said it was temporary and no one made it sound like a big deal.
“I went through congestive heart failure myself,” Dr. T told me. “You feel like you want to die.” Yep. Can’t argue with that.
So while I’m disappointed it will take a while to recover, I guess it’s good to know what to expect and that my slow progress isn’t out of the ordinary.
The shot was no big deal. Side effect should be minimal with the potential primary one being neuropathy in the extremities. I am to report this ASAP if I experience it; if so, they will change the medication to something else.
I will be getting a shot every Wednesday for the next twelve weeks. They will also combine my every- two-week visits for blood work and Aranesp with those visits, which is good. This week my hemoglobin was 9.7. I actually didn’t expect it to be that high as in the hospital it was 8.3. BUT… then I remembered that it was likely diluted from all the fluid in me. So many things to have to consider when thinking about this stuff.
My last 24-hour urine that was completed before I left the hospital was 4000 mg. Still way too high but a big improvement over the 10 grams it was earlier in the summer. So… even though the prednisone tried to kill me, it does appear it helped restore a little bit of kidney function.
I had more lab work done Friday for Dr. A. She told me that if my creatinine is stable, she will consider putting my back on lisinopril for my blood pressure. I hope so! I don’t know why I respond so well to that medication but I can take ONE of those damn pills and have perfectly controlled blood pressure or take the five pills I’m taking now and still have it be on the higher side. In the past the creatinine was still very high even off the meds so maybe the lisinopril was of little consequence in that regard. We’ll see. I’m also hoping my potassium has improved so I can get off those horse pills. They’re huge. Even broken in half they’re difficult to swallow.
I was hoping for a good day Friday as I had a bunch of stuff around the house I’ve been wanting to catch up on since all this started. But Friday was just a bad day. I was absolutely exhausted. Maybe it was from being back to work. I don’t know. I actually slept well for once. But aside from getting labs done, I couldn’t accomplish anything. I spent most of the day on the couch, sleeping off and on. This weekend was a bit better. A little more energy, and I was able to scratch a thing or two off my list. We’ll see how this week goes.
I’ll share this embarrassing story with you. My mother had asked me a few times if I needed a ride Wednesday to the hematology appointment. Prior to my appointment, I called the office and spoke with the nurse because no one had given me any information on this whole chemo thing. As a matter of fact, I thought it was an hours-long infusion like the Rituxan had been. But nope. It’s literally just a shot, and I was told I would be able to drive myself. Great. That was definitely my preference, even if it wasn’t my mother’s. So after my appointment, I was literally one step away from my car, but that step was over a curb, and I just didn’t make it. I did not have the strength to lift my stupid leg over the, what? four-inch curb? And I fell.
Luckily, it was a nice gentle rolling fall, one of those slo-mo ones in which you know you’re falling but there’s nothing you can do about it. By the time I sat up on the sidewalk, two gentlemen were there, and miraculously, they were able to help me back on my feet. I was pretty mortified but so grateful I didn’t hurt anything. But it was a solid reminder to me that I am nowhere near back to normal.
Hemoglobin: 9.7
Protein in the urine: 4000 mg
Low, Low, Low 