The Next Crazy Thing

Buckle in! This is a processing post so it is likely to be long and wordy and emotional and probably flawed in many ways. I thank you for your patience and anyone who makes it to the end gets bonus points in my book 😏. 

Let's start with the info. I've been having progressively more intense, more frequent, and longer lasting migraines. Since my eye surgery in May, I've also been experiencing a great deal of nausea, almost daily. Sometimes meds help (with either), sometimes they don't. In addition, since the eye surgery, my double vision has intensified. My depth perception is shot, I'm regularly missing things I grab for, mistaking curbs for cracks in the sidewalk, bumping into walls or counters. Those are the three things that neurosurgery told us to watch for with regards to the shunt functioning properly: headaches, nausea, and vision changes. Now the vision changes were probably because of the surgery and the nausea was probably because of the migraines, but the fact is the trifecta was there. So, we contacted neurosurgery, and they decided it would be worthwhile to move up my annual checkup from August to June.

On Wednesday I headed to The City early in the morning (have to with traffic) to get my MRIs done. Because we were scheduling at the last minute, they only had early morning MRIs and later afternoon doctor appointments available, so we had quite a wait in between. Thankfully, a friend who lives nearish to The City said she'd come in and have lunch with us at the hospital cafeteria. That was such a blessing! Just before the appointment with my neurosurgeon, I got a notification that I had new test results available. What a world we live in! I pulled it up on my phone and was a little disheartened to read:

Slight increase in size of the residual unenhancing mass lesion centered at the roof of the fourth ventricle, with otherwise stable intracranial findings.

But my focus was on the word, "Slight." I told my husband that my guess was the doctor would see it as no big deal, maybe even just the difference between machines, and we'd be dismissed to come back next year. Turns out I was wrong. We spent the first thirty minutes of our appointment trying to get my shunt adjusted post MRI. The shunt in my head moderates the amount of CSF in my brain to prevent hydrocephalus because my tumor is somewhat blocking my 4th ventricle which would allow it to drain naturally (at least as I understand it). It has various settings that are controlled by a magnet. The HUGE magnet in the MRI machine messes up my settings so they have to use a magnet device in the doctor's office after to put it back on the right setting. This was not straight forward and the poor PA who was trying to do it had to shift to an old school backup that looked a lot like a traditional compass. But eventually she got it as close as possible. After a little wait, my surgeon came in. He had a serious look on his face so my original guess was swiftly being revised in my mind. 

He was more concerned than I had thought he would be, and he decided that it would be best to send me to Neuro Oncology. They deal predominantly with chemotherapy and the type of tumor I have, a pilocytic astrocytoma, does not typically respond to that, but they are the first step on the path, and they start to determine the direction of treatment. There evidently are a couple of radiation therapies that might be available so it would not be unlikely for them to pass us onto Neuro Radio Oncology. He also shared with us that because of the tumor's location it is not currently a surgical candidate at all. If you look at the picture below, my tumor is the white part. I've colored my cerebellum green and my brain stem red. The original surgical pathway he took was from below, between the brain stem and the cerebellum, and he resected as much of the tumor as possible from that direction. The only other path would be to come from the back, up and over the cerebellum and down towards the tumor from above. That has A LOT of different red flags, not the least of which would be crossing through my vision and hearing centers. At this point my tumor is not life threatening, just life altering, so it is not worth the extreme risk to quality of life that any of these procedures would entail. If, in the future, the situation changed dramatically (say it became life threatening, it grew to 5x it's size, etc) we would revisit our options. He also moved up my neurosurgery callback timeline to say he wanted to see me again in six months rather than a year.

We left that appointment a little shell shocked. After my surgeries last year, we had been told that chemo and radiation were not options because of the tumor's position, so I had mentally closed the door to that path. Really, I was super thankful. A sweet friend had been going through chemo and radiation for a brain tumor at the same time I was dealing with my brain surgeries, at the same hospital even so my husband got to go visit her sometimes, and I think we were both grateful to not be dealing with what the other person was having to. She didn't want to do surgery and I REALLY didn't want to do chemo and radiation. I think a part of me felt cheated Wednesday afternoon. I wasn't supposed to have to do this! They told me this was off the table. They told me I wasn't a candidate. I already moved on. How can I be back here?

It didn't take as long for it to feel real and serious this time as it did last time. I think my husband got it right away in the appointment with the neurosurgeon. Its settling in with me a little slower, but the gravity was definitely there in the first car trip home. I let my immediate family know right away. It was hard because I don't have a lot of details or information to give them. I think to some degree that makes it feel less real. I posted on our Facebook group where a larger number of friends have been following our journey. My husband pointed out that my post was rather matter of fact and didn't entirely communicate the gravity of the situation or the difficulty of what we were facing. He's right. I don't want to cry wolf. I don't want to exaggerate or make a bigger deal out of a situation than it is. I mean, people do chemo and radiation every day. I know LOTS of people who have done it. But still, it feels like a pretty big deal. So, he posted a more detailed analysis of the situation that hopefully better communicated where we were at.

So where am I at? I'm just not sure. I haven't cried yet. That's saying something because my husband and at least one of my sons have, and they are not ones that do that. Maybe I'm holding out until someone gives me details of what exactly I'm facing. I don't want to borrow tomorrow's troubles. There are things I'm deeply scared about. First, nausea. After years, decades really, of chronic pain I've developed so many strategies that I feel like I can, with God's help, deal with that. But nausea? Really? Ugh. Apart from giving birth (I'm allergic to the drugs they put in the spinal) I can count on my fingers the number of times I've thrown up before my brain surgeries. Not after. Nausea is my nemesis. Second, I'm scared of the radiation mask. You may or may not know what I'm talking about, but my understanding is they make this mask that helps you to hold still so the radiation goes to just the right spot. I'm scared of making the mask. I'm scared of using the mask. I'm scared. Ok, that'll make me cry.

I 100% trust that God's got this though. I'm not a bit worried. Scared of the stupid mask, yeah, but He'll get me through that. I have no doubt that God has a plan and a purpose for all of this. He will use it. It will be worth it. I may not understand it this side of heaven, but I still trust and I still believe. He's got me. He's got my family. We're in the palm of His hand. When I struggle in holding onto these truths, I listen to this playlist that I've been curating for the last year and a half. As it says in one of my favorite worship songs at church, sometimes I need to praise Him until I believe it. It's so hard to praise God and be afraid at the same time. So, I choose praise!

So what do I need/how can you help?

#1 My family

My first heart is for my family. They've been through so much already this last year and I know this is trauma on top of trauma. If God puts them on your heart, pray for them. Reach out to them. Let them know you're praying, see if there's any specific requests. Most specifically for my husband and my youngest son at home, if you are involved in their lives, reach out to them periodically to see if they're ok. Don't take, "I'm fine," for an answer. Get them to go out for coffee or go for a walk. You'll have to set up a specific date, don't offer an open-ended invitation - they'll never take it up. "Hey, J. Want to come over for tacos on Tuesday?" "Hey, M. Can we grab a milkshake in the middle of the night after search and rescue at Denny's?" That you'll probably get taken up on. For the others, if you have some way to communicate with them (like on Facebook), reach out and let them know you're thinking of them. They tend to get lost in all this.

#2 I NEED TO HEAR FROM YOU

After my surgeries last year, the enemy staged a very successful campaign to isolate me and make me feel alone and unloved. He convinced everyone that reaching out to me would bother or hurt me in some way. It was so successful that even an immediate family member felt like he had to wait weeks after my surgery this spring to check on me so that he did not bother me. What ended up happening is I sat at home alone feeling like the world had forgotten me. I was so lonely. Here's the truth. God has spent the last several years teaching me how to maintain healthy boundaries. He's taught me how to know my body, my health, my mind and know what my limits are. He's taught me to respect and communicate my limits. You will not harm me, I won't let you. If it's not ok for me to read texts for some reason, I won't. I'll either have them read to me, I'll let my husband read and reply for me, or I'll save them for when I can. This is what I can tell you, if God has put me on your heart, I need your prayers and I need to hear from you. If you have my number, text me. If you have me on Facebook, message me. If you have neither, email saltyzebrablog@outlook.com . I am not always great about getting back to email, so be patient with me. Depending on where I'm at in life you may only get a "Thank you" in reply, but know that it meant so much to me. Don't know what to say? Send me a meme, please send me a meme! Laughter really is the best medicine! I can't tell you how much of my therapy is just sitting and scrolling through silly memes, like the one that started this post. If you're out there on the inter webs and you come across something that makes you chuckle and you think, "I bet Christy would like this," send it my way!

Here's the Thing: You made it to the end! You get the bonus points!!! Thank you for bearing with me. Thank you for caring. Thank you for your prayers. If you have experience with nausea and/or chemo and radiation, I'd love to make this post a repository for advice on how to deal with such things so I can look back when I need to and glean from all your wisdom, so comment below. Love you all!

Here's your bonus: