Two trips to the lab to recap.
Last week, after all the med changes, my creatinine had dropped significantly, down to 1.9 from 3.6. This was excellent news. I guess when the nurse told me, I had a stunned look on my face, which she couldn’t really read due to the mask. She said, “This is a GOOD thing.” I said, “I know! It’s a GREAT thing! I’m just shocked it came down so quickly.”
Unfortunately, my hemoglobin dipped back into the 8s, although just barely. But for whatever reason, I’m just not responding to the Aranesp like I was in the past. This week wasn’t an Aranesp week anyway, so I just had to put up with it.
I hadn’t really been home much for the last four months since Zeke’s surgery. And it’s amazing how even when I’m not home, the house becomes a wreck… unsorted mail, dust bunnies taking over the place, just… stuff. So Friday I came home. Zeke’s doing fine; he doesn’t really need his night nanny anymore. Yay! I’ll miss staying with Kyle and the pups, but it was hard being gone for so long. Friday I had running around to do, but Saturday I actually had enough energy to clean the house! I was so happy about that. (Shows you how exciting my life is when I’m thrilled I can clean.) It’s discouraging when I have a list of things to do and just can’t do them. It was a real sense of accomplishment to make the house livable again. (Okay, I still need to vacuum.)
While I was sitting in the waiting room today, a woman came out of the doctor’s office, waved to the scheduling clerk and said, “I’ll see you in a year!” I’m not going to lie… I was jealous. That will never be me. I’ll never get to say, “See you in a year!” “I’ll see you in a week” is more my speed. But good for her. I imagine her road to being able to say that was difficult. I’m sure she earned it.
Today I had an appointment with the oncologist again. I don’t typically see him this frequently (I think it’s only been two weeks), but he wanted to follow up on the labs since all the medication changes. My creatinine today had dropped even further, to 1.71. And the results from the 24-hour urine collection was good, if not great. It was basically stable at 2000 mg. But even though it hadn’t decreased, it confirmed the doc’s suspicion that the rise in creatinine was medication-induced and NOT true kidney function decline. Had it been, the amount of protein would have increased, likely substantially. I was really hoping for this outcome… either stable or decreased, so I was pleased.
He still hopes to see my creatinine drop down to about 1.4 and the protein drop to 500 – 1000 mg. Honestly, I think that’s probably not attainable, but hopefully I’m wrong.
Jumping into the way back machine, there are typically three outcomes with this disease:
- No recovery…do not pass go, just head straight to dialysis.
- Partial recovery… the protein decreases but not to normal. I think it’s safe to say I’m in this category, at least for now.
- Complete recovery…a misnomer, as once kidney function is lost, it can’t really be recovered. But in this instance, it means stabilizing at the present level and with protein levels under 500 mg.
I think it’s possible that my status could certainly change for the better or worse and move into another category. But for now partial recovery is pretty okay.
It’s frustrating that I’m just at the whim of my kidneys and these medications. There’s nothing I can do to improve anything. As I’ve mentioned before, it’s not like you get your cholesterol results back, and they’re pretty piss-poor. “Hmm. Guess I should stop eating a stick of butter every night before bed.” (Definitely not me—I hate butter.) I just have to wait it out and hope for the best. Me? Control freak? Nooooo….
Speaking of things one can change… I finally brought up a topic with the doc today that I’ve been putting off because it’s just one. more. thing. My glucose levels. They’re not going down with any consistency. I told him I thought it was finally time to address this. He agreed but is opting to let my primary care doctor handle it. “Just make sure he doesn’t choose a medication that’s harmful to the kidneys!” Are there diabetes meds that are harmful to the kidneys?? Wouldn’t that be ironic since diabetes is harmful to the kidneys? I told him I would message the PA nephrologist since she deals with this stuff all the time. Dr. T said he’d message my PCP and tell him I’ll be on “long-term steroids.” BIG. EFFING. SIGH. (But at least these are a thousand times easier to tolerate than the prednisone.)
He said my steroid-induced diabetes is going to be a little more difficult to monitor than “typical” diabetes because it’s going to fluctuate a lot. He asked what my numbers have been in the days before taking the dexamethasone compared to the day of taking it and the next few days after. “I’ll be honest with you, doc. I have no idea. I haven’t been checking it like I should be.” So really the only time it gets checked is at the lab the day that I take the steroid, so it stands to reason it would be higher. I guess I’ll be a good little patient and start checking it. He said that I will have to watch that pretty carefully once I’m on meds and should I only take it when needed to avoid going hypoglycemic. I told him I was well-versed in that as Kyle has diabetes and deals with hypoglycemia somewhat regularly.
He’s going to recheck my thyroid labs next week when I’m there. Oh wait, next week is my “off week.” He’ll check them the following week to make sure everything is staying in the range it should be. He said in post-thyroid cancer patients, endocrinologists typically want patients to be on the slightly hyperthyroid side to suppress the regrowth of cancer. I wonder how long that is a concern. It’s now been nine years since my thyroidectomy, but I do have some “suspicious” lymph nodes in my neck. Unfortunately, they are in an area that can’t easily be treated. But luckily, at least as of my last ultrasound (last year? I can’t even remember), they haven’t grown or changed.
At this point we are just going to stay the course… continue with the Kyprolis and dexamethasone. He said there’s really not much difference between the Kyprolis and the Velcade I had been on, but I don’t buy that 100% because if that were the case, why would they start with Velcade, knowing it has the potential side effects of neuropathy (still dealing with that, by the way)? Maybe it’s an insurance thing. You gotta do one first before the insurance will approve the other. I don’t know. I didn’t feel like getting into that today, and besides, it doesn’t really matter… no more Velcade for me.
He upped my Aranesp as of today to hopefully help combat this fatigue. (Last night after work I had to take a “nap” that ended being for two hours. Got up, talked to Kyle, took my medicine, and went to bed. This is my life most days.) I’m now up to 225 mcg, but the nurse said it can go as high as 500 mcg so I’m not even to the halfway dose yet. Hopefully I won’t need to get to that point.
My BP was pretty high in the office today, higher than it is at home. I’m sure you’ve heard of “white coat hypertension.” But they took it twice, and it was still high. I had self-regulated my current BP meds and decided to take one pill in the morning and a half-pill in the evening. But I’m going to go back to a full additional pill in the evening. He said if that doesn’t work, we’ll throw something else into the mix. But hopefully this will take care of it. Oh goody… one more thing to monitor!
I’m currently only (?) taking 10 pills a day (except on Wednesday when I take the three steroid pills). When I said that to the nurse last week, she said, “You have to take TEN pills a day??” But to me it’s such an improvement!! I believe the most I was taking at one point was 27. That’s ridiculous, difficult to manage, and it really pissed me off. I only take three pills in the morning now—and I had to check that like three times to make sure I wasn’t forgetting anything. Several of the pills I take are OTC: cetirizine for my wicked allergies, iron, vitamin C and folic acid to help with absorption of the iron, and vitamin D. I think I only take five prescription pills now, including the one-day-a-week dexamethasone.
I asked the head nurse today what I should do with the Revlimid that I’m not going to be taking. I was hoping there was some program it could go to to help those who couldn’t afford it. But no such luck. Instead, I need to call the company and get it returned back to them. I guess that makes sense–they can then reimburse my insurance the $22,000 they paid out for the meds.
My hemoglobin was 9.1 today so it was an Aranesp day, along with the Kyprolis. The older gentleman next to me was getting Velcade, and I silently hoped his feet would be spared the neuropathy side effects. I even continued to hope for this even as he felt the need to continually criticize the nurse for the mask policy in the hospital. “You’re in an oncology lab, sir,” she said, far more politely than I would have responded. “People in this room are at higher risk.” It didn’t shut him up, but I was glad she said something. Idiot. Why would he think the nurse had any input on the mask policy anyway?? Go talk to Mr. Lovelace, you old fool. But I still hope your feet are okay.
This is off topic but with the death of my dear friend Jack, there has naturally been talk of “Why Jack?” I mentioned this long ago that to me, that’s just not a question worth asking because there’s no good answer. Why not Jack? Why not me? Or you? Or any of us? None of us is special. This is just life. BUT… it hit me this week that maybe I interpret that differently (and more cynically) than other people. In my mind, I hear, “Why [ ]? Why not that person over there?” And maybe that’s just me and NOT the way other people mean it. Maybe people truly just mean, “Why [ ]?”
Still never a good answer though.
Hemoglobin: 9.1
Creatinine: 1.71
eGFR: not yet reported
Low, Low, Low 