In the middle of whole brain radiation. When I am supposed to feel bogged down with fatigue and increased brain fog and dullness. Yet I feel more clear, more open, more engaged than I have been in ages.
I am more myself today than I have been in almost a year. Alive and free. Completely present. Swelling with gratitude to Jesus. Lavish with thanks for my people who surround me. Abundant in energy. Brimming with perspective and clarity. No anxiety, no worry, no fear. I rearranged all the furniture in my living room and stood in the chaos of it all with my arms raised to the heavens swaying and singing to our good, good Father. Alive and free.
I stopped taking my cancer treatment pill, Sutent, exactly 4 weeks ago today. Slowly over those 4 weeks my body has been clearing its remnants from my system, and I feel confident that today I am feeling the last of those side effects subsiding. And wow, y'all. I had no idea how much it was affecting me. No. Idea. When you experience side effects, they creep up so slowly that you don't really realize that it's happening. Each day is just barely different from the day before, so you forget what your baseline is for a proper comparison, so you're just stuck comparing it to the day before, which doesn't seem much different than the day before that and so on. Well let me tell you, there were WAY MORE side effects than I ever realized.
Since May I've been significantly more fatigued. Significantly. I was teaching 2 classes at EHCS, 2 different preps, and it was all I could do to prep and teach those 2 classes and parent my toddler after school ended. That was it. That's all I had. Most days I was taking a nap or resting for hours without gaining much energy or zest from those periods of restfulness. The fatigue obviously took my energy, but it also stole my capacity to accomplish tasks. If before the Sutent I could joyfully accomplish 12 things throughout the day, on the Sutent I could accomplish maybe 3 things feeling constantly overwhelmed and burdened. The fatigue was really quite secondary to the problem of feeling incapacitated to do things that I could typically do easily and well.
I'm so thankful that this happened gradually and slowly so that I could gradually adapt to a new way of living. Looking back, I think I handled myself fairly graciously through that time. I wasn't particularly difficult or draining to deal with, and I made a concerted effort to do as much for my family, friends, and students as I possibly could. That's part of not giving up; you have to keep going, no matter what. That's how you survive hard times. But I can see clearly now why certain things have been so much harder for me in the last year than they otherwise would have been due to the incapacitation of my cancer treatment.
I've never been in the situation before where the treatment is worse than the disease, as is so common to cancer patients. And before today, I don't know that I would have been able to identify that as my current situation, but that is absolutely where I have been the last 11 months, without even knowing it. My cancer isn't producing ANY symptoms other than fatigue and a little soreness at some of the tumor sites. Now granted, some of the tumors are in super important organs (brain, liver, heart, spleen, lungs) and will eventually start to cause problems, and there's no way to know when "eventually" will come. But man you guys. There is something to be said for being able to feel ALIVE and FREE even when you have metastatic cancer!! I will carry this clarity and perspective intimately close to my heart as we traverse the swamps of the clinical trial medications and new side effects.
This thought leads me to a heartbreaking question: how do you decide between being the best mental, spiritual, and emotional version of yourself or fighting the physical illness that will end you while truncating all of your you-ness with no guarantee of cure? Where is the balance there? I love balance and look for moderation in almost every decision I make, but there is none to be found here. What a humbling and potentially excruciating thought.
I am surprised to say that I don't feel tortured by this junction, but instead enlightened. There is a choice. It is in my power to choose. I am not destined to be a droned version of myself for a long and strenuous fight if I do not choose that path. The alternate trail is more unknown and risky, but it's there, it's present, it's an opportunity. What a precious sweet gift.
The first week of radiation was hard. It was so hard. I was still under the fog and fatigue and incapacitation of the Sutent, plus the new fog and fatigue of the radiation. Double fatigue, double fog, plus incapacitation. I slept most of the time, ate my meals in bed, snuggled with my babe and my baby, studied and taught the urinary system. That's 100% of what I did days 1-7 of radiation, with some relief on the weekend. Good attitude? Absolutely. Have to. Won't make it without it. But man it was HARD.
Then Friday something amazing happened. John and I had time together. Our schedules were oppressive last week and we hadn't spent enough time in one another's presence, which had serious consequences on my ability to process radiation plus life that week. I was so personally offended that he wasn't acting happy and himself. In our relationship, John is the stable, steady hand so that while I'm going up and down all over the place, I always know where to find him in his steady, stable place. I knew last week that radiation was hard for ME. I kew that big time. But I wasn't willing to accept that it was also hard for HIM, that it was rocking him out of his stable steady place into a new, harder and sadder place. In our morning time together, he was able to talk me out of my brain trap and help me see something simple that I was missing- it's all hard. It's hard in all the ways for all of us. I couldn't see past my own difficulty and I expected my husband to continue business as usual while I paused to do this really hard thing. But he's my husband, my person. What's hard for me is hard for him. It's not just me, it's us. It's always us. And I had neglected to walk it as us, stuck in my own spiraling, cyclical brain trap. Each day since my Friday breakthrough has been more and more enlivened by my me-ness emerging and by the Holy Spirit breaking down my brain traps.
Let me tell you some amazing things that the Holy Spirit has been doing for me. I'm doing a class with church on Wednesday nights where we are memorizing key scriptures of truth, adding them to who we are, our very being. This week the verse we are memorizing is Matthew 6:33-34, but let me just show you the context of that particular passage. Read it it's so good:
After we read and talked about this passage I wrote down this paraphrase:
Believe you are beloved, seek first the kingdom, and even your most basic needs will be met. Don't even worry about it.
Guys, I started losing my hair yesterday. And I have been living in this verse in Matthew where Jesus is speaking on a mountainside to eager listeners, and simultaneously to my own fragile heart saying "Seek my kingdom and I will take care of the rest. I clothe the grass, I'll clothe your head, too. Don't even worry about it. Just seek me, seek my kingdom. I'll take care of the troubles. Don't even worry about them."
I'm not an emotional mess all over the floor like I always imagined I would be if I lost my hair again (yes, again). God has been preparing me, encouraging me with his Holy Spirit for this moment. It's not mine to worry about. I'm seeking the kingdom. He's taking care of the rest.
My hair is basically just thinning all over right now I think. I'm not really sure because it's still in yesterday's messy bun on the top of my head. Probably tomorrow too. I'll let it get all loose and deal with it all at once, then contain it in a hot mess bun for another few days again. Bandaid effect, not little at a time. After a couple of weeks I will assess what needs to happen after I can get an adequate state of the hair union. But I've been at war with my hair for the last few months because of the Sutent, so I'm not super sad to see it go. The Sutent was turning my hair white, well like platinum blonde, around my hairline. So like right there when you look at my face- BOOM. Blonde hairs. So I home dyed it with one of my homegirls, and it looked okaaaay (wrong color? color soaked too long? rookie mistakes), but dramatically changed the texture of my hair. So now its not my color, not my texture, not my hair. So I'm kind of glad for a chance to start over. And this comes at an exceptionally good time since I am feeling amazing today. Today it's easy to remember that I am not my hair, that I am my spirit and passions and spunk. No hair? No problem.
Today I am alive. Today I am free. Praise God, our good good Father, for all of the little miracles he does in our lives and in our hearts to draw us closer into his own heart. Every good and perfect gift is from above and for the glory of God. This amazing Alive and Free day is for God's glory; it is answers to the prayers you pray on my behalf for God's glory. Remember those hard questions with no great answers? This is the rest of that story. Here are some of the prayers being answered. Here is God in all of his graciousness, all his restoration, all his redemption, all his love.
Praise God with me today for his faithfulness, for his foresight, for being love and compassion, for being justice and mercy. Praise God with me for hearing our prayers, for sometimes saying yes, for sometimes saying no, and for always trying to draw us close to his heart. Praise God that my me-ness is emerging, for this Alive and Free day. Seek first his kingdom with me today- that's both Jesus and his people, and rest in knowing that he's taking care of everything else, even your basic needs.
Your companionship on this journey is a true gift to me. Thank you for walking with us. All our love goes out to you.