I follow a blog [wherearemypillows.com] written by a woman with a rare disease called autoimmune encephalitis (AE), which causes the immune system to attack the brain and spinal cord. It causes a variety of neurologic and psychiatric symptoms. Like a lot of rare diseases, it’s often misdiagnosed, and reaching the right conclusion takes time. Because the symptoms often include hallucinations, delusions, anxiety, etc., it’s frequently misdiagnosed as a psychiatric issue. So people can wind up in a psych ward for a physiological illness. How awful. (There’s a good book about this condition called “Brain on Fire,” which was turned into a dreadful movie.)
I can’t recall exactly how I came across this woman’s blog, but I believe it had to do with rituximab, the initial drug I was prescribed for my rare disease. It’s frequently used for treatment of AE.
She recently wrote a two-part blog about the fact that even though this disease is usually treated by a neurologist, it was a persistent psychiatrist that led the way to her diagnosis and appropriate treatment (and even that took five years). It got me thinking about my treatment, and how even though I have a kidney disease, I’m being treated by an oncologist. And actually, at this moment, I really don’t have any nephrologist involved in my care.
I was lucky though, relatively speaking—it only took a year from the time I had symptoms to the time I was diagnosed. But in those early days, I was caught in that no-man’s land of not having cancer so I wouldn’t fall under the care of oncology but still needing chemo which nephrologists don’t administer. It was incredibly frustrating. Before things changed (and to be honest, I’m not exactly sure why things changed), there was the possibility of my having to drive to Pennsylvania once a month for treatment. Just thinking about that exhausts me. I’m so grateful to Dr. T for going outside his oncology box and taking on my case. As difficult as it is to schedule my life around weekly chemo treatments, I can’t even imagine trying to work around monthly drives across the country.
I had my colonoscopy Friday. For those who care (don’t worry, no specific details will be given here), the Sutab pills did the trick! So if you have an upcoming colonoscopy, and you can’t stomach that nasty liquid, definitely ask your doc about the pills. No major concerns on the colonoscopy, although I will need to have it repeated in two years.
The last few weeks my creatinine has been good, so therefore my eGFR has been good as well. My labs from last week were really good: creatinine at 1.18 and eGFR at 52. But, just as I’m trying not to get too worked up when things go south, I’m not going to get too excited when the numbers head in the right direction. Things can turn on a dime.
This time of year has a lot of anniversaries for me. It was two years ago that I drove to Pennsylvania to meet with Dr. A and get the rituximab treatment. That was a dark time. I was feeling so sick then, so swollen by the prednisone, and so hopeful the treatment would work. And even though it didn’t, I don’t regret the trip out there because it could have worked, and I wouldn’t have known if I hadn’t tried. And of course, at that time, Dr. A was crucial to arranging my future treatment with Dr. T. I wouldn’t have known where to go or what to do had it not been for her.
I’ve now been on chemotherapy for two years and on the current drug Kyprolis for one year. At my last visit with the oncologist, I couldn’t bring myself to ask him how much longer he thinks I’ll be on the chemo. I just wasn’t ready to hear the answer if he said another year. But at my appointment with him this month, I’ll suck it up and ask. I know I need to know; I just hope the answer is something I can tolerate.
And in about a week, it will be the 10-year anniversary of my thyroidectomy. As I’ve mentioned before, I think I’m pretty much out of the woods with that. One continuing suspicious lymph node in a bad location but no changes in it over the years.
Kyle and I celebrated our 14th anniversary as well. He has somehow managed to stick by me through all this mess, and it’s not always easy.
Upcoming I have another 24-hour urine test in preparation for my appointment with Dr. T. This is being repeated sooner than normal since the last one was suspicious (the same volume was recorded on two tests in a row). Then I have an appointment with the new nephrologist at the end of the month. I’m interested to see how that goes.
On a very sad note, we lost our sweet and cranky boy Arrow on May 30th. He had a really great day the previous day, so it came as a shock when he took a sudden turn. He had cancer and was 18, so of course we knew his time with us was limited. We also knew we would never let him suffer. We miss so much about him. He was just such a character. I really do believe he delighted in making us laugh because he did a hundred silly things a day. He was Kyle’s faithful buddy for 16 amazing years. It’s difficult not hearing Arrow’s collar jingle, having him jump around when we return home, his talking back when he felt he was being slighted, and just all those little rituals you get used to when you have a dog. It’s an odd thing now because although my mother still has our (family) dog Della, we no longer have a dog at the house. But when the time is right, and the dogs are right, that will change.