About a month ago, a friend of mine got sick and wound up in the hospital. She’d been feeling generally crappy for a couple weeks. After thinking she was on the mend, she took a sudden turn and found herself in the ER and then admitted to the hospital for two days. Her medical issues were completely different from mine, but the outcome was so much the same: a significant drop in her hemoglobin leading to anemia and the fatigue that results from that.
Of course I was concerned about her, but dang, I wasn’t expecting to relive all I went through as she and I discussed all that she was going through … the inability to work, freezing all the time, the need to lay down after 15 whole minutes of doing anything even remotely physical. Once again, I was catapulted back to fall 2020. I don’t want to diminish true PTSD, but I would put my reaction in that category, although it’s fairly mild. It took me by surprise that it was still just under the surface. So strange. I still shake my head about the fact that we both went through that. Luckily, her situation resolved, and she is doing much better. (Well, she was until the bills started rolling in.)
I believe I mentioned before that my acid reflux and heartburn had greatly diminished over the past several weeks. For the most part that continues to be the case. But one Friday morning about two weeks ago, I stopped on my way to work and bought a Clif bar as I sometimes do. Same variety I’ve had many times before. Oh boy. About a half hour after eating it, while sitting in a staff meeting, I was hit hard, suddenly and without warning. I thought I was going to throw up. After the meeting I ran back to my house to take some medication before I carried on with my errands. That was really awful. And so weird that it was on a Friday.
This past post-chemo Wednesday night I had some low-grade heartburn that didn’t progress to acid reflux, but it kept me awake most of the night. I hope this isn’t a signal that it’s coming back. I’ve SO enjoyed the benefits of sleep on Wednesdays!
I had an appointment with the oncologist about two weeks ago. Overall, things are still essentially going in the right direction. My last 24-hour urine test indicated 377 mg of protein, up a bit from the previous test two months ago (366 mg) and from its lowest point in March (263 mg). But he said he will be pleased if it stays below 400 mg.
I forced myself to ask how much longer he thinks I’ll be on the chemo regimen. The dreaded answer: another year. Not what I wanted to hear, but it was what I expected to hear, so it didn’t come as a shock. I’ve already made my clinic schedules for next year, keeping my Wednesday afternoons open.
He also said if my markers continue to look good (hemoglobin in the 11s, creatinine between 1.1 and 1.5, eGFR in the 40s – 50s, and protein in the urine below 400 mg), then in six months we may try decreasing the dose of the Kyprolis and do a slow weaning off process rather than just stopping it completely. I’d much rather do that. As much as it’s an inconvenience to get the chemo infusion every week, it’s a little unnerving to think of being off it altogether. What will happen then? Will I be “cured” (or as cured as someone can be with this disease)? Will I go into remission? For how long? Will I have to go back on Kyprolis at some point? Who knows. I’m the guinea pig.
(And I have serious doubts my hemoglobin will stay in the 11s. It’s been that high for the past couple of weeks, but those are definitely outliers. I think I’ll see it more in the 10s, with the Aranesp shots pushing it into the 11s on occasion. But I wouldn’t mind being wrong.)
We discussed my getting the second shots of Evusheld (the COVID prophylaxis) in September, six months after my first shots. He’ll be the one to put in the referral for that, so I’ll just message him at that time.
He cautioned that it could very well be some ‘outside force’ that causes my kidney values to change—an illness, a medication, a procedure (such as the recent colonoscopy; luckily that went off without a hitch). He advised me to be cautious of medication changes, over the counter meds, and to keep track of such things (good lord, he should see my google calendar. It’s overwhelming), to not let any illnesses get out of control, to not get dehydrated. I reminded him that I’d had that stomach bug in March and had the video visit with an urgent care doc to get some anti-nausea meds and still had plenty left over. He said, “You can always message me, and I can put in the prescription for you.” I seriously never even though of that. I guess I just figured that was more of an issue for a PCP.
He indicated toward his phone and said, “I’m never far away from work.” He’d mentioned that before, so I said, “That’s great for your patients but not too good for you. There are so many reports out right now about burnout of health care workers.” (My saying this was not completely altruistic. It would be bad for me if he burns out and quits!)
His response surprised me: “People who aren’t dedicated burn out. There are four oncologists here, and we’re always working. We don’t take time off even when we take time off. We’re not burned out because we’re dedicated to our patients.”
That may be his experience, but man, I couldn’t disagree more. I’m dedicated to my job and my patients but I’m also burnt out big time. I keep thinking I need a month off, which isn’t going happen. It just makes sense that if you’re eating-breathing-sleeping work, it’s going to have an effect. Obviously, his job has far more significant consequences than mine does, so I can see where that would propel him to continue on, but still. We all need a break.
[Somewhat related: over the last two months, I’ve (stupidly?) been keeping track of my actual work hours, versus those I just get paid for. In May, I worked an average of 15.5 hours per day, and in June it was 15.75 hours per day. I guess that at least contributes to why I’m so tired all the damn time.]
I told him I was seeing the podiatrist and the new nephrologist soon. He told me to ask the nephrologist if there is a way to determine the status of my disease without doing another kidney biopsy. I wrote this down.
For now, we just continue on: chemo three weeks on one week off, lab work three weeks on one week off, and Aranesp shots as needed. Assuming things don’t get any worse, I’ll see him in six months with another 24-hour urine test at that time.
Wednesday I had an appointment with the podiatrist and also one with my new nephrologist. I was off that day so I was lucky enough to get both appointments on the same day. The appointment with the nephrologist was made several months ago. When I called to make the appointment with the podiatrist, I asked if they had an appointment first thing in the morning. She said the earliest available was 9:30. (My nephrology visit was at 11:00.) I asked how long the appointment would take, and she said new patients were scheduled for thirty minutes. Okay then, no problem. I’d be out in plenty of time. [You can see where this is going.]
When I arrived, I was given an iPad and a stylus with which to check in. All was fine until I got to the “medications” section. Using a damn stylus, I had to type in, one letter at a time, all my medications and their doses. Are you kidding me? Eighteen total meds in all. And it wasn’t the kind of keyboard you could type on with your fingers. Trust me, I tried. So…that took forever. If they’re that sophisticated, seems like they could send out a link for online check-in to enter all that information and save a TON of time. Cheaper too. But what do I know.
After I completed that punishing task, the tech took me back to take x-rays of my feet. Then into another room to complete two tests, a conductivity test for neuropathy and another one for peripheral artery disease. At this point it was now 10:30. I’d need to be out of there by 10:45 at the absolute latest.
The podiatrist came in, was very nice, stated that both of the above tests were negative but that the test for neuropathy can sometimes produce false negatives. “The only way to definitively determine if you have neuropathy is to do a punch biopsy of your calf.”
I’m sorry, what?
I’m going to veer off for a second here. There is a vet in town whom Kyle used a couple times for his pups. This guy was test happy. Couldn’t diagnose anything without a hundred (costly) tests. Now, I get it—you’re dealing with a dog who can’t tell you what’s wrong. But none of our vets since then rely on tests as much as this guy did. I know I’m cynical, but I just always think those things come down to getting their grubby paws on my money.
That was kind of the feeling I got from this doc. He wasn’t being super pushy about it, but he did say more than once, “We don’t have to get prior approval from your insurance; they’ll cover it.” Hmmm. I said I’d think about it.
I asked him, “Let’s say I do that test, and it’s positive for neuropathy. Then what?”
“We treat it.” [God I hope I didn’t roll my eyes.]
“Um. Yes. How do you treat it?”
“A lot of patients find relief with alpha lipoic acid.” I see. More on this later.
Now, my goal for this appointment was to discuss pain management, maybe with some orthotics or some awesomely stylish diabetic tennis shoes (that’s sarcasm, if you haven’t seen diabetic shoes before). And granted, it’s possible that if I didn’t have to run out of there for my next appointment, it’s something we could have discussed. But as it was, I had no time for that. Out the door I went.
About ten days ago, I went to the office of the new nephrologist, Dr. G, to drop off a huge packet of info: their intake forms, my kidney ultrasounds, PET scans, bone marrow biopsy results, kidney biopsy results, most recent lab work, a timeline of my illness, and, last but not least, in anticipation that maybe this doc wasn’t familiar with my disease, an article from The New England Journal of Medicine that discussed the treatment of the disease with bortezomib, as though it is multiple myeloma.
When I arrived for my appointment, I didn’t have to fill anything out since I’d done it all. One clerk said to the other, “She already brought in all her paperwork, and it’s scanned in to her file.” What a tedious job that must have been. It was a LOT of information.
The medical assistant took me back and asked if I could give a urine sample. No problem. She handed me the cup, and I headed off to the restroom—only to completely forget I was supposed to give her a sample and instead proceeded to pee in the toilet instead of the cup. Idiot. I remembered at the last possible moment, so they got about 12 drops. Nice.
I went back to the exam room, and when Dr. G came in, he sat down and immediately said, “I know that God has sent you to me today,” followed by the sign of the cross.
Uh, pardon me?
I didn’t say anything, but I imagine I had a puzzled look on my face. He went on to explain that he has another patient with my disease whom he’s been treating for some time, but nothing has worked—not prednisone nor rituximab, but he had NOT yet tried bortezomib. He said he was going to arrange for her to get this drug as soon as possible, but he was concerned that at this point her disease had progressed too far.
I knew he couldn’t give me any information about her, but I did ask how old she is. “Twenty-two.” Oh man. That was like a knife in my heart. Twenty-two and having to deal with all this? How incredibly scary to be facing the prospect of many years of dialysis and/or a transplant at such a young age. Even though I know I shouldn’t, I’m sure I’ll ask him about her at my next visit. I certainly hope he’ll have good news.
He was very thrilled with my improvement since starting on the Velcade/Kyprolis and certainly saw no reason to change anything at this point. I told him about Dr. T’s plan to slowly taper down the Kyprolis in six months if all continues as is. He agreed with the plan, agreed that I’m a guinea pig, and also agreed that a biopsy would be needed maybe in a year’s time. This is the only way to determine the amount of damage in the kidneys.
I told him about the difference in biopsy procedures from when my previous nephrologist did it vs. when the doc from interventional radiation did it, the last one being incredibly long, tedious, and nightmare-ish. He said he does his own biopsies (yay), and that most of the time, when it’s a non-nephrologist doing the procedure, they don’t get the right information anyway. He showed me on a picture that the needle only needs to go into the kidney a small amount because the cells they want are in the outer layers of the kidneys. “These other guys, they think more is better so they just jab that needle into the kidney, way too deep.” Yikes. Ouch. He said the actual kidney biopsy should take about five minutes, if that. Yep, that was my experience with the first go-round. The second? Not so much.
During our conversation, he stated that there are only about one hundred people in the country with this disease. (There are probably many more who are yet to be diagnosed.) Therefore, of course, there’s not enough information available to determine who gets this disease, if there are any common denominators, who responds to treatment, etc. I do find it intriguing that with such a small number of cases, we have three known in New Mexico (me, this doc’s other patient, and my previous nephrologist’s other patient). Who knows, maybe that will mean something down the road.
For now, no changes to meds or plans or anything. I will see him again in October with lab work preceding the appointment.
Circling back to the podiatrist: his assistant wrote “alpha lipoic acid [ALA]” on the paperwork I left with so I did some googling when I got home, and reputable sources like the National Institute of Health state that many people find relief from neuropathy using it. [If you have neuropathy, don’t take my word for it. Absolutely ask your doctor.] I also googled its effect on kidney function and creatinine levels and found no known negative effects. It didn’t occur to me to ask the nephrologist when I was there, too busy discussing other things I guess, so I messaged him later. He said it should be safe to take the ALA but to keep track when I start it to see if there is any negative effect. He also said he didn’t think there was a reason to pursue the punch biopsy. “Negative is negative,” he said.
So I’m thinking I should call the podiatrist’s office again, tell them I’m not interested in the biopsy but that I’d like to schedule another appointment to discuss the foot pain management, and is that something this doc does?
Oh, one thing the doc showed me on the x-rays is that there is a “shadow” where two of the arteries are in my feet. I wasn’t 100% clear on what that meant (and was trying to get out of the office), but he said it’s something I should follow up on with my PCP and that it could mean that a heart work up is indicated. Oh goody. More crap. (See? I told you he liked tests.)
I did have an EKG and an echocardiogram prior to the shit hitting the fan in November 2020, both normal. This was done because of the heart palpitations I was having but that was likely due to the anemia. When I was in the ER that November, they did some type of imaging (I can’t recall what) that indicated fluid around my heart (thanks prednisone) but said it was likely temporary. No one has ever suggested repeat tests, until now. I see my PCP in October so I’ll get some clarification then.
Up next: endocrinology at the end of the month.
And of course, I’ll end on another dog note. This boy Wesley is staying with me just for a few days so he can have some special attention during the stress of the 4th of July weekend. He’s an NMDOG, rescued from the summer heat last year with 14 pounds of matted hair on him. He’s a resilient pup and is just a big silly goofball. Unfortunately, he’s too big for us to take in but I’m hopeful he’ll find a great family to give him the life he deserves.
Low, Low, Low 