I had an incredibly informative video visit Friday with Dr. S in Pittsburgh. There were issues with her being able to connect to the visit initially (ah, technology in the age of COVID-19 when everything remote is being put to the test), but after that was resolved, she spent an unheard of 90 minutes with me. I was immediately struck by how kind she is. She is an excellent listener, too.
She explained the unknown nature of this disease, how the lack of clearing and therefore buildup of creatinine in my kidneys was causing scarring yet damaging the filters and allowing the protein to leak out in the urine, causing the anemia.
The scarring that has been done is irreversible.
She stated that it can take up to four months to see improvement, and the outcome of treatment breaks down into thirds:
–1/3 of people experience complete recovery, indicated by fewer than 500 mg of protein in their urine.
–1/3 of people experience partial recovery, where the protein output improves but not to below 500 mg.
–1/3 of people to not have any meaningful recovery, and unfortunately make their way to complete renal failure and dialysis.
“Complete recovery” doesn’t sound as hopeful as it actually is. It means that my 30-ish percent kidney function is now my new normal. (I’m fortunate that since the decreased kidney function was discovered last June, it has not decreased any further.) The goal of treatment is to just keep it here. People can and do live their whole lives at Stage III.
I’m not typically an optimist but I’m choosing to look at this as a 66% chance of some measure of success.
She explained the nature of the chemotherapy treatment: to kill the “bad soldiers,” as she referred to them—those abnormal protein cells that are growing in my kidneys. She stated when this disease was initially discovered, they threw very heavy-duty chemo drugs at it, with all their inherent side effects, to no avail. Tests with Rituxan (a generally well-tolerated chemo drug) combined with prednisone seemed to show the most promise.
And… prednisone. I mentioned in my previous post that this drug has incredibly wide applications but also has some nasty side effects. I’ve been on it before, primarily for relief of my severe allergies, but once due to a sudden hearing loss, I was on it for 16 days and thought I was going to lose my mind. I said to myself after that, “No more prednisone for me! I am done with this drug.” But for this regimen, I have to be on it for several MONTHS.
I’m going to have to buckle in.
Side effects include restlessness, irritability, appetite stimulation (great, when I’m stuck in the house surrounded by food!), hot flashes, and more seriously, potential damage to bone density, decrease in my immune function (just in time for COVID-19), and an increase in my anemia. Zoiks. But I’ll do it. What choice do I have?
She said I’m outside the window for when they typically start the highest dose of prednisone. I took that to be a bad sign, but I’m not particularly surprised. It’s been over a year since symptoms began and three months since the official diagnosis, and my local providers did nothing. (I’m not bitter. You’re bitter.)
She told me she is very willing to work with the oncologist in California and also asked again if she wanted me to speak with my local physicians here. I told her no because I don’t want to see a physician whose arm has to be twisted to treat me. I am not trying to make this treatment some sort of “adventure.” I had every expectation when it was diagnosed that I would be treated right here in Albuquerque. But I want to be seen by a provider who actually wants to help me, not someone who is talked into it.
She relayed a personal story of a family member, who, as a child, needed a very serious surgery. No one in Pittsburgh would help her family, as they felt it was too risky. They had to travel to the Midwest for help. She said she understood my viewpoint. “Sometimes you just have to find one person who cares,” she said.
She asked me how far it was to get to the Bay Area, and I said a two-hour plane trip. She said, “No, you cannot fly. You’ll have to drive. How far is it to drive?” At least two days, I told her.
Then she asked me the magical question: “Where do you want to go?” I told her that if it’s completely up to me, I want to go to Pittsburgh. They have the expertise, and she herself is very interested in this disease.
She asked, “You can drive here? You need two treatments with a week in between. How will you manage that?” I told her I can drive, and I can stay for three weeks without issue. (I have nearly 1200 hours of sick leave. This won’t even make a dent, plus I can still work remotely at least some of the time.)
She said, “Okay then. We’ll get to work on getting you out here.”
Finally. Music to my ears.
By mid-afternoon, prescriptions were ready for me at my local Walgreens (predisone and an antibiotic I think due to the decreased immune response). She’s mailing me lab orders—another 24 hour urine test, all kinds of blood work, including a test for something called the “JC virus” or the human polyomavirus 2. As I understood her to say, it’s a common virus many of us have been exposed to. There is also not much known about it, and there’s no cure. It rarely causes any issues but it can be “activated” by the Rituxan, and the worst outcome with this activated virus is brain damage. Oh my. She assured me that it’s rare and that she’s not had a patient test positive for it, so that’s good news.
I told her I’m on board with anything and everything that needed to be done, and that I can be in Pittsburgh at any time, as long as I’m given a three-day head start to drive there. She said I’ll hearing from her office manager. I hope she means soon. I didn’t ask. I’m getting what I want so I didn’t want to be too pushy.
I’m excited about this new development but trying to keep my expectations tempered. At every turn in this ordeal, something has been thrown in my path to keep me from getting treated. As I’ve said several times to people since that video visit, when I’m strapped in a chair with Rituxan entering my arm, then I’ll believe it’s going to happen.
Low, Low, Low 