The carp (koi) is a symbol of perseverance in Japan. So it felt fitting to fold them while I waited for the oncologist to come in and go over my third, Valentine's Day (so romantic, MRI test results earlier this week. Thank you to my friend Kathryn for going with me. We went out to lunch after at one of the few places I feel comfortable eating out at with my macrobiotics and made a fun afternoon of it.
The good news. The gliomas have not increased in size or quantity since the second MRI in August.
The not so great news? The third MRI found another bizarre thing in my brain. It's a fetal defect called a Segment A1 Anterior Hypoplasia. Translated, a major artery on the right side of my brain never developed fully when I was a fetus. There's nothing to be done and the doctor suggested there's also nothing to worry about. That this isn't an uncommon occurrence though mine being in the front of the brain instead of the back of the brain makes it more unusual from what I read online. I also read it is most problematic if you have a stroke. I'm not planning on having a stroke so I've decided it's not something for me to be concerned about.
Then came a discussion about what's next?
I shared with her my thoughts and feelings that I didn't want to do a lot of MRI's in the future after having three in the past ten months. I opened with: "From what I've learned on the internet... I paused for laughter. We both LOL'ed... it appears that there really isn't an effective treatment for thalamic gliomas that progress past stage 2 (what I have)."
If they progress to stage 3 or 4 things are pretty much over. If and when that happens they typically become astrocytomas or glioblastomas, the two most aggressive forms of brain cancer. A small portion of people do recover from stage 3 or 4 but I haven't found a single documented case of that happening when the cancer is in the deep, inoperable part of the thalamus. It's usually in an area where the tumor can be removed surgically and supportive treatment whether that's chemo, radiation, or a holistic path are the post-surgical course that turned things around towards remission.
At my first consultation she had mentioned that if that happened I could try chemo. But from what little I was able to glean online chemo isn't a cure and usually doesn't lead to remission. It buys you a handful of months and can also cause cognitive damage that can impair one's quality of life. Her reply was: "That's correct."
It was a frank discussion because I've already made the decision I would choose quality over quantity of life, therefore I don't see the point of having more tests done. If the news were to ever come back they are worse, I'd waste some of the time I have left waiting for them to get bad enough to begin causing symptoms. That isn't how to maintain quality of life either.
I told her learning they were worse wouldn't change anything else about my life but to cause more stress. There isn't anything I want to do, nowhere I want to go, I'm exactly where I want to be doing what I want to do with the person I want to be with. In a strange way it's still a happily ever after kind of place to be.
She agreed that if I wouldn't want to pursue treatment it was fine with her to not monitor them so closely. We left it at I would come back in a year for a follow up MRI.
I also decided against the spinal tap she had recommended, based on the radiologist's suggestion I should be tested for MS. Neither neuro-oncologist in Grand Rapids or Ann Arbor (where I went for a second opinion) believe I have MS but said it had to be suggested because of the radiologists recommendation.
If the test came back that I did have MS the only treatment option would be lifelong medications. I'm not interested in pursuing that course either and since I have no symptoms, again, why find out now?
So now I'm going to focus on carrying on, moving forward, and not giving the gliomas any seat at my table. If they get worse then that's that. But there's also the chance they will never become more than what they are and won't impact my health or life except for the better by making me take better care of myself and appreciate each precious moment while I'm here.
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I still have a neurology appointment at U of M (scheduled last June) for May of this year. That's how long the wait is. This is for the trigeminal nerve damage that caused severe pain in my face for almost 8 years and from time to time still flares up but nowhere near the intensity of pain that it did before I started the macrobiotics.
