Mom has an autoimmune disease called Wegener's Granulomatosis (WG). Nowadays, it's been renamed to ANCA-Associated Vasculitis. Honestly, you can google for any info I could provide you. I will say that Wegener's is an autoimmune disease, not to be confused with something like AIDS: Acquired ImmunoDeficiency Syndrome. I know they sound similar, but they're almost opposites: In an autoimmune disease like Wegener's, your immune system is almost on auto-pilot and attacks everything in sight, including your own cells. Your immune system is doing *too much.* In an immunodeficient disease like AIDS, your immune system is weak/destroyed. Your immune system is doing *too little.*
Besides Wegener's, another example of an autoimmune disease is systemic lupus erythematosus, AKA lupus.
So, Mom's had Wegener's for many years. And in recent years (2012, 2013), her vision started to deteriorate. That can come with Wegener's, but Mom's Wegener's was apparently stable. So they did an MRI of Mom's head:
That was on 9.28.2012. The left side of the brain is on the right, and vice versa. You can tell by the "R" and "L" notations on the image.
On the left side of the brain, do you see that tumor? I don't, either. Nor did the doctors. If it was there, it wasn't apparent.
Mom's eyesight continued to deteriorate in 2013, and no one had a good explanation nor solution. She even traveled to specialists in Portland and Minnesota. (The latter being the famous Mayo Clinic, which my mom did enjoy.)
All this was also happening while Mom was taking care of Grandma. We all miss Grandma Fong.
Grandma died on Christmas Day, 2013. On February 19, 2014, a Wednesday, my sister took Mom to the ER. They did a CT that evening and another MRI the next evening. They saw this:
I've put the earlier MRI below to compare more easily.
I lined up the slices as well as I could.
Of course, now that I look at the slices lined up, I wonder if I do see something? But I know nothing about brain images, so I'll just quote the report summary from 9.28.2012.
IMPRESSION:
1. No evidence of intraorbital or intracranial involvement with
Wegener's granulomatosis.
2. Extensive white matter nodular changes within the corona
radiata and centrum semiovale, nonspecific, but presumably
related to aging.
The MRI from 2.20.2014 reports the tumor as "5.9 cm x 4.2 cm x 5.3 cm." They also said it was most likely a meningioma. (That would have been a better diagnosis.)
Anyway, Mom wanted to know about the surgery. My notes say the surgery happened on February 22, a Saturday, starting at 8 AM, lasting several hours. The doctors removed (resected) as much of the tumor as they could, and they also tested the tumor tissue to know exactly what kind of cancer it was. The diagnosis would come back as Primary Central-Nervous-System Lymphoma (PCNSL). Also, they did another CT on February 23 to see how things looked after surgery:
Of course, now Mom had to heal from her surgery. She had some major stitches. I feel like Mom went through every department in the hospital, as she was in op, post-op, acute rehab, rehab, and probably oncology and who knows what else.
Mom was discharged on March 8, 2014, a Saturday. From the day my sister took Mom to the ER, that's 18 days. If anything, I'd say that Mom's good at rolling with the punches. (Grandma was, too.)
Mom still had a lot of rehabilitation and recovery to do. And, as the tumor was not a meningioma but instead this metastatic lymphoma, Mom needed more treatment. Next up: chemotherapy on March 17, 2014. That was also the start of the Game Developers Conference (GDC), my favorite conference of the year. Should I still go? Would I still go?
One more thing before ending this post. Remember how I said Wegener's is an autoimmune disease, and pretty much the opposite of AIDS, an immunodeficient disease? Well, if you google primary CNS lymphoma, you'll find that PCNSL usually occurs in immunodeficient people. That's right, immunodeficient (aka immunocompromised). So why did Mom get PCNSL, when she should have an overactive immune system? My understanding is that Mom's immune system has been essentially compromised/deficient/suppressed, because she's been on medications, for several years, that suppress her immune system. So, yeah, the drugs my mom was given probably led to her cancer. That said, Mom almost died from Wegener's over 20 years ago.
We'll just keep rolling with the punches and doing our best.
2 comments:
My dad also went to the ER exactly on Feb. 19th. He did not have an MRI until a few weeks later as the symptoms were subtle. He too turned out to have PCNSL. It did not respond to chemo and he passed this week. I am very sorry.
Many people have survived this; I know some personally even though it is rare. Best wishes to your family.
I'm sorry about your dad.
I also have heard of many who have survived PCNSL. The survival rate has increased significantly in the past few years, but that's far from a cure. We just take things a day or a week at a time.
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