A Lot Has Happened
Hi everyone, it’s Grace writing the whole post this time. A lot has happened in the past three months. We didn’t update for a while because we were holding our breath for my next set of scans in March.
To summarize what happened before, I had finished chemo right before Christmas and was getting “maintenance” pembrolizumab infusions, meaning I was getting a drug that amps up your immune system to try to get your own body to recognize and kill any remaining cancer cells. So between January and March, I was getting pembrolizumab infusions every three weeks. This was a risky move, but since my cancer is so rare and no one knows the right way to treat it, and since I had such a great response to the chemo and pembrolizumab before, this was the decision that all my doctors felt was the best at the time. In the meanwhile, I was also seeing radiation oncologists at multiple places to see if I should be getting radiation to my lungs or anywhere else to try to prevent cancer recurrence, but the consensus ended up being no to radiation at the time.
So between all the doctors’ appointments and infusions, Ashton and I were adjusting to post-chemo life and contemplating how and when we would go back to work if my March scans continued to be clean. And those moments in between were bliss– we hiked, did impromptu trips, went to a family wedding, joined a life group at church. God really blessed us in between the seriousness of all the medical appointments and trying to figure out how to go back to work. Both of our residency programs have been so incredibly supportive with allowing both of us to take time off/take a research year, I’m still so humbled and grateful every day that I think about how much our programs take care of us.
But. The day of my next scans came, and on Monday March 4, my CT scan showed cancer recurrence in the lymph nodes in my chest and a new soft tissue mass near one of my ribs. The pembrolizumab infusions didn’t work to keep the cancer away. The rest of that week was a flurry of additional scans that further revealed that the cancer had spread to my brain, liver, bones, and lymph nodes. Our worst fears became reality, and it’s an understatement to say that we were devastated. Every single day that week brought another piece of bad news…Tuesday: You have liver and more bone mets…Wednesday: You have 3 brain mets…Thursday: You have to relocate to Houston to get into a clinical trial at MD Anderson ASAP, but you have to get through all the red tape of getting plugged in there between now and Friday afternoon.
It doesn’t sound like it at this point in the post, but Jesus interceded for us in those darkest moments. We have an incredible friend who is a radiation oncology resident at MD Anderson who got me plugged in with their radiation oncology department quickly so I could get treated for the brain mets. I also became the first enrollee in a new clinical trial at MD Anderson for a medication called a BET inhibitor, which is a targeted oral medication for my specific cancer. For the medical people reading this, the gist is that in NUT midline carcinoma, there is a translocation in the NUT protein on chromatin that binds to bromodomain (BET) proteins to form a fusion oncoprotein that affects transcription and cell cycle regulation. So BET inhibitors should displace the BET proteins and thus prevent their cancerous downstream effects on transcription and cell cycle regulation.
Within two weeks of getting the bad news on the scans, Ashton and I temporarily moved to Houston for a month to get radiation and go to the hospital almost every day for the clinical trial. After the first month, the visits get less frequent, about twice a month, so we are planning to move back home to Irvine on April 13 and fly back and forth when we need to. This is all under the assumption that I respond well to the clinical trial drug, of course.
On March 20, I underwent gamma knife radiation for my brain metastases, which is a form of radiosurgery. To translate for non-medical people, gamma knife uses precise radiation beams to nuke the brain mets as a less-invasive alternative to neurosurgery. On March 22, I started the BET inhibitor drug. I take it by mouth every day, and I go in to the hospital almost every day to get lab draws to make sure that my blood work looks safe and to monitor how much of the BET inhibitor drug is in my blood. My next PET scan is May 1, so we won’t know the full extent of my response until then.
We’re living in a short-term rental apartment through a website called Sonder. They have listings on AirBnB, but they are their own property management company. They manage really nicely decorated apartments all around the world, and they’re pretty reasonably priced in Houston. We were given options of MD Anderson-affiliated short-term rentals, but when we compared the prices, they happened to be exactly the same price (if not more) than Sonder, so it was a no-brainer to go with the prettier apartment in the nicer neighborhood. Ashton’s parents drove out their car to Houston from California so that we didn’t have to rent one, and they stayed with us the first week to drive us to the hospital, do groceries, and help us get settled in. I’m so thankful for such kind, self-sacrificing in-laws.
I have been struggling a lot with physical pain. My left paraspinal region (area right next to my spine in the middle of my back) and left hip have been incredibly painful, and there is cancer activity on my PET scan in those areas, so it’s probably the cancer causing the pain. We saw a radiation oncologist at MD Anderson about it and we decided that I’ll get radiation to my spine, left paraspinal area, and left rib where the new soft tissue mass was on my scans. We have to wait until next week to do it because that’s when I take a break from taking the clinical trial drug, and the radiation oncologists don’t want to radiate while I’m on the drug since it’s so new and we don’t know how it will affect the spinal cord. But we’re praying that God works through the radiation to relieve me of this pain, and that there are no complications with the radiation treatments. This pain has been excruciating. I’m taking scheduled NSAIDs and opioids. It wakes me up at least two times a night, and we treat it with meds, hot baths, and incessant prayers. The pain is getting more frequent, which could either mean the cancer is growing or responding to the BET inhibitor. We pray that the cancer is dying, and it could make sense, because last time when the chemo killed my cancer en masse, my symptoms seemed to get worse before they got better (i.e. I started spitting up blood and coughed so much that I broke 2 ribs before my scans started to show less cancer, which probably reflected the tumor being killed). I think that cancer dying is just as painful as cancer growing, and it helps me get through the pain to think that this disgusting cancer is dying, while the rest of my body overcomes it.
We’re all taught in med school to recognize that chronic pain is debilitating, complex, and needs to be treated in multiple modalities, but we don’t truly grasp the gravity of it until we experience it. I have a whole new understanding for patients in pain now that I am one. I remember back when I was just starting anesthesia residency, I was looking so much more forward to my OR months rather than the chronic pain clinic or acute pain service months because in all honesty, I was selfish and I didn’t want to hear patients talk about pain. I just wanted to learn and master putting someone to sleep and put in lines and IVs like a boss. Now after all this, when God allows me to go back to work I am going to walk into a room with a patient in pain and be like “I feel you. Maybe not the exact way you feel it, but I’ve felt pain and I will never minimize or depersonalize what you’re feeling. And I’m going to do whatever I can to help, no matter how much more time it takes.”
I also just started experiencing nausea, which is a common side effect of the BET inhibitors. That’s another thing that I feel like I minimized as a resident. In anesthesia, preventing post-op nausea is part of the algorithm, you give the two anti-emetics or more depending on the risk factors and hope for the best after the surgery. But you’re not the one who gets the nausea, it’s a third-party concept to you so you just follow the algorithm. Now that I’m on the other side, the nausea is so terrible. It’s so demoralizing when I start to feel that bitter taste in my mouth and throw up the food that I worked so hard to put down, especially since my appetite has been down. I want to eat so I keep watching Food Network shows to increase my appetite, but then when the nausea hits everything is undone.
In the first few weeks of getting the bad news, my heart felt like it was getting pulverized faster and faster into a black hole, and a sick, twisted voice in my head kept taunting me: “You really didn’t see this coming? Were you really that naïve to think that God healed you just like that? What makes you so special to think that you could be a medical miracle?” I’m not saying that this voice was right (because it’s not), I’m just sharing this to illustrate how emotionally painful this time was for me. I struggled with a lot of anxiety in those first few weeks, and want to be completely real with you: I felt abandoned by God. I felt like all those prayers that we were so in awe of being answered back in December were a sick joke, and I started spiraling into hopelessness.
2 Corinthians 4:7-8 says this: “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair.” In my experience, I actually was crushed and I was in despair. But I think that is exactly how God transformed me. I don’t think the point of this passage is to say that we should never be crushed or in despair if we are true Christians; I interpret it as God sometimes brings us to the crushing and despair point in order to give us the treasure and make us truly understand how all-surpassing He is. And only after that boiling point, are we able to move forward stronger. We can face future trials feeling hard-pressed and perplexed, but we don’t succumb to feeling crushed and in despair because God transformed us before.
So how did God transform me? It happened over the weeks. I regularly read the Bible by myself and with Ashton, and I felt that each day God was giving me assurance that He didn’t abandon me and that this is part of a bigger plan. Yes, I am in pain and this situation is far from ideal. I know this sounds so cliché, but I really can’t describe it in another way. The more I cling to the Bible and pray to God, this is what I keep feeling in my heart. Every church service we went to and live-streamed on Sundays had a message that spoke to this concept, and every worship song we sang at those services confirmed that God is working in my life and hardship right now so that I will be spiritually matured and able to be His tool in bringing others to Him. I love the words of this song “Won’t Stop Now” by Elevation Worship:
“I know breakthrough is coming
By faith I see a miracle
My God made me a promise
And it won’t stop now”
Sure, you can say that all these worship songs are generic and can apply to anyone’s hard situation, but it could have been any other worship song that played during the service that we went to and we probably sang this one for a reason.
There was also a point when I got really discouraged when I would read certain theologians opinions on illness and healing. There was an article I read where the writer basically made the argument that God doesn’t heal all the time, and instead of clinging to irrational hope for miracles people should prepare their hearts for death and meeting God in the afterlife. Talk about the worst possible thing to read when you’re feeling down already. After talking to my pastor and family, I stopped reading those particular theologians. The best way someone helped me get over my cognitive dissonance to this was by saying “this theologian is trying to put God into a box, that He does this or doesn’t do this, when in reality it’s impossible to know what God is going to do and why.”
This is where personal faith comes in. Hebrews 11:1 says, “Now faith is confidence in what we hope for and assurance about what we do not see.” Everyone has different hopes and assurances, and Christians also have a unifying hope and assurance of perfect, eternal life with Jesus. I’m not going to put God in a box and assume that He is going to heal me exactly in this way or not heal me in that way. Instead, I keep praying for the cure and surrender to however that happens. I pray that while I’m going through the pain, that God gives me the strength and perseverance to bear the pain so that it matures me as a believer and allows me to be a more effective tool for Him in the future.