Whole Brain Radiation

Here we are again, hearing the news we didn't want to hear.

Seems like that's been happening a lot, huh?

After 4 sarcoma occurrences throughout childhood and adolescence, finding another at age 24. In my heart. During my pregnancy. That cancer showing growth and spread during my third trimester. More growth a couple years later. MORE growth on treatment. Promising clinical trial doesn't open for 6 weeks later than we want. Brain mets. No radiosurgery. Whole brain radiation.

That list is maddening. Frustrating. Bad wordy (there was a real live bad word here but my mature minister husband made me delete it) (it started with a s) (that's all I'm going to say) (metastatic cancer sometimes makes bad words come out of me). Unbelievably upright downright angry all the time. That list asks questions like "WHY IS THIS HAPPENING TO ME?!? Can't I catch a break?!? Aren't we deserving of a WIN!? What did I do to deserve this??"

But that list, while true and HARD and absolutely real, is not the list I carry in my heart. It's not the whole story. The whole story includes an 11 year period of remission, small surgeries instead of harmful treatments, a healthy pregnancy and an awesome healthy baby girl, a 3 year stretch of no cancer meds while there was a tumor in my HEART (who gets stable cancer in their heart?!), a novel treatment that wasn't around for any of my other 4 occurrences, then a brand new promising experimental treatment, and finally a fix for the brain mets so I can get said promising treatment.

The whole story is the bad news with the blessings, the hardships with the redemption.

I have a list of hard things that I didn't want to do, but am having to do anyway. It's my compromise list. And anything that comes up, like this, that I didn't want to have to deal with but am faced with anyway goes straight on that list. And once it hits the list, it just becomes part of life; the next step in the road. Taking an experimental combo of meds, traveling to Miami once a week to get those meds, waiting for MRI results, starting injectable blood thinners, having brain mets, getting brain radiation. Notice, not every hard thing is on there (waiting for 6 weeks to start the trial- definitely not on there, like a thousand miles away from being on there), but a good handful of them made the list.

I'm not emotional about it, I'm not mortified by it, I'm not overcome by it. This strength, this peace and patience and faithfulness and gentleness... this is the power of Christ and the Holy Spirit living in me. As more and more get piled onto that initial list of losses, as I become more and more powerless to my circumstance, the more the Spirit of God is taking home in my heart. The last two days I have felt so peaceful without asking for it, so patient without cause for patience. That is the overflow of the Spirit of The Lord.

It's hard to look at that initial list without thinking that our prayers have not been effective, that God is turning a blind eye to our cries and our pleads. But I assure you that is not the case. Not now, not ever. In fact, James 5:16 says "Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results." The results may not look wonderful today, but this moment of disappointment is not the whole story. My cancer is not the whole story. The whole story can only be found in Christ.

The redeeming work of Jesus, the redeeming love of Jesus, and the redeeming power of Jesus. That's the whole story. Let us hold unswervingly to the hope that we profess, for he who promised is faithful (that's straight out of Hebrews 10!).



What's that? You came to find out about my MRI results and not hear a sermon? Oh okay, I got mixed up. Here's what we found out today:

There were 23 brain mets. 

And the remarkable thing is that having 23 brain mets feels an awful lot like having zero brain mets. Which makes having 23 brain mets not feel as scary as I thought it might feel. It actually just feels kind of regular. The original MRI said more than 20, and the precise MRI confirmed those findings. That's way too many mets to do radiosurgery, so I will be doing whole brain radiation. Which sounds worse than it is. The pro to whole brain radiation (oxymoron) is that in addition to affecting the 23 mets they were able to identify, they will also be treating the mets that are there but are too small to see. Booyah. The purpose of the radiation is to control the vascularization (blood vessels) of the tumors so that there is a greatly reduced chance of those mets bleeding while I am on treatment in Miami.

I would like to take this moment to teach you a little something about metastatic cancer that I teach my science classes, but I am going to use breast cancer as an example. If a patient has breast cancer that spreads to the brain, lung, and liver, she does not have brain cancer AND lung cancer AND liver cancer in addition to her breast cancer. The cells from the breast cancer have broken off and spread to other organs, so she actually has cancer cells from her breast in her brain and lung and liver. Similarly, I do not have brain cancer, I have sarcoma that has metastasized (spread, "mets" comes from this word) to the brain. End educational moment.

I have an appointment tomorrow morning for brain mapping with a CT scan and to get fitted for a mask. The mask is going to be fitted to my face so that I don't move during radiation. I knew what he was talking about as he described it not because of my 3 painful years of medical training, but a highly dramatic episode of Grey's Anatomy. So there you go.

Tomorrow at 8 I'll be going to get my very own Wayne Gretzky mask. Please don't ask me anything about Wayne Gretzky, I barely spelled his name right.

Radiation should start next week and will only last 2 weeks. They say I should feel about the same after each treatment as I did when I walked in to the treatment, maybe some additional fatigue toward the final treatments. Over time there may be short term memory impairment (Dory! Is saying Dory inappropriate? I've been thinking about it all day!), but no impairment to personality or long term memory- so you're stuck with the same quirky me you've always been stuck with.

The clinical trial in Miami is HOLDING A SPOT for me and I could receive the trial meds as soon as 2 weeks after completing radiation treatments!! The trial is still on!

Here are some things you can be praying for:
-No short or long term side effects from radiation
-No short term side effects from radiation
-No long term side effects from radiation
-No side effects from radiation
-Holy Spirit strength and peace and patience and endurance
-Continued perspective
-My awesome husband
-Our families and friends as they support us without being physically present at each of these appointments and hard turns
-Our sweet CJ and that we can continue to parent her well with the stability she needs
-Thanksgiving for treatment options, for an amazing support system, for peaceful days watching the clouds go by

Thank you for sticking by us. Love to you all.