Share the graces. But share the sufferings as well. We had our scan a few nights ago and it came back with very little to no tumor growth. The radiation doctor was very pleased. It’s still there, but it isn’t getting larger. What a blessing. Sadly, that’s not all that showed up. I had another MRI of the spine done to see what the deal is with all this nerve pain from the LP. I was so convinced that it was nerve damage. My hips and lower back and knee have been in so much pain. Last night we received a phone call from one of the nurses asking if we could come back in because the spinal scan showed nodules (the cancer) down my neck and spine. It spread.
So that’s not good. At all. It’s called leptomenigeal spread. I was under the impression that brain cancer couldn’t spread but I guess the spine and neck are exceptions? The fact that it spread is pretty unusual. It happens in less than 10% of all Glioblastoma patients. Of course. Everything about me, my cancer, everything. It’s all very rare and unusual but somehow I managed to get it all!
We are still coming down from the high at Lourdes so trying to process all of this is a lot. I know I shouldn’t have, but I asked the doctor if this was going to kill me. He said, “yes.” Clearly he didn’t read the book “The Best Yes” or he would’ve known he could have said “no.” It’s funny, when it happened, it didn’t make me mad, but now, I’m thinking what is the doctors purpose to just say “yes.” Sure, it’s LIKELY, but you just don’t ever know how someone will die. So don’t tell me yes this cancer will be what kills you unless you go by the name Jesus Christ. Ok thanks.
So what now? Well, it’s kind of like starting over but not. This isn’t something I can have surgery on, unfortunately. He said it’s like sprinkling grass seed everywhere. After a few days you’ll see some growth from some and not the others but you know the seeds are there and that they will grow. First thing on the line up card will be radiation…again. I’ll start a week from today but it’s only a week long this time (which means a much higher dosage of the radiation than when I had it before). They will radiate my neck and my spine (separately). I’m pretty anxious about the radiation this go around. He said it causes nausea and that’s already a struggle over here so I’m praying it’s not as bad as he made it sound. In addition to that, because of where they radiating, it will most likely take out my ovaries. This news wasn’t as devastating as I thought it would be. Probably because I can’t imagine being healthy enough to have a baby anytime soon. The other thing it could affect would be my voice because they are radiating right there. The thought of never singing again is heartbreaking. But not being here is more heartbreaking. If not singing or talking again is what I have to do to stay here, I would sacrifice it in an instant.
After my week of radiation I’ll have a procedure to put a port IN my brain. I’ve already had two brain surgeries so what’s a third? Maybe third times the charm? It’s called Ommaya if you’re curiosity gets the best of you. They place the port under the skin and administer chemo that way so it goes directly into your brain (and in my case will go to my spine). And yes, when that starts, I will be taking 2 types of chemo at once. Ugh. BUT WAIT, THERES MORE! I’ll also begin immunotherapy with this as well. I wasn’t a candidate for it before but now I am so let’s see what happens! The doctor kept calling it black magic so it must be good stuff. There’s a clinical trial going on right now with immunotherapy that I don’t qualify for but they just want to do it so I think that’s even better since trials have placebos.
Even after an incredible pilgrimage to Lourdes, hearing this news shook us. It’s still shaking us some. But Why? When has God left us once through out all of this? He hasn’t. I already said, it has to be this bad in order for it to be the testimony that it’s going to be. I’m praying we can stop here and press forward with the healing now.