Friday was a double doc appointment day for me. First I met with my therapist – all good on that front. We mostly talked about my work situation, but he did ask how I felt I was coping with EVERYTHING. And I said, “I think I am doing quite amazing with it all.” And he agreed. So mentally we are still on track.
In the afternoon I met with my rheumatologist. She said the same thing about the next step of treatment as she did at the last appointment – we need to have the nose biopsy either support or not-really-support vasculitis, before a decision is made on the chemo. She commented on how hard it is to get an ENT referral and then said, “Let’s try calling right now.” She picked up the phone and made a call. She was directed to another office. And told me that she had never done this before. Then with her second call, name dropping herself each time, there was some back and forth and then, “Yes, she’s sitting right here with me.” And then, “Can you make next Tuesday?” And I said, “Yes! I will make it work.” And done. Biopsy is scheduled for next Tuesday. Like gosh. After all that. And then she said, “I have never done that before! Good to know I can.”
So the plan is still the same – biopsy, then get the results and decide based upon the results. And the good news related to that, is that we talked about the “chemo”. She explained that the doses are less than what you would use for traditional cancer treatment, and the side effects are not as severe. There is still nauseousness and fatigue and mouth sores and potential liver and kidney issues, but she explained that some people are on these doses for decades. Oh, but alcohol would need to be limited – flip. But still, it was much better than I was thinking. I would get a dose once a week, either injection or orally, however injections are shown to provide better results and have less side effects, but we didn’t speak to those details yet. I am just pleased that we dispelled some of my misconceptions about the possible outcomes of the chemo drugs.
She also said that she would recommend reducing my prednisone from 40mg to 30mg, but we will wait until my lung specialist appointment next Friday to see if he agrees. And she ordered me standing blood work, which means I will just go for routine blood and urine, to ensure we are watching all my levels of interest. I am super pumped about this.
But, she is a bit concerned that I still have this chest cold. And hopes it’s not a sign of my lungs still being compromised somehow. For some reason I am not concerned, because I know Arrine has had a chest cold and cough for months now, literally months, and I have it now too. But now I am concerned that I wasn’t concerned but the rheumatologist is concerned. I am sure it’s fine… 🙂
But the big kicker that happened, was when she was reading to me the letter that the lung specialist wrote after his last appointment with me, and she paraphrased, “Well, he isn’t recommending the kidney biopsy right now, so that’s good.” And on the outside, I replied very calmly and as if I already knew, “Oh, ya, that’s good.” And on the inside, I was screaming, “KIDNEY BIOPSY?? NO ONE MENTIONED THIS TO ME BEFORE!!!” Apparently the lung doc was considering more surgery to biopsy and test my kidneys, but fortunately the second round of blood work showed improvement of my levels, so the biopsy was put on hold. So, we will just keep monitoring that, and hope that it they stay in good ranges. We will find out in a couple of weeks when I get my blood and urine tested again.
So that’s it for the health update for now. Lung specialist next Friday and we will go from there…