All Other Ground Is Sinking Sand
Where we are now:
We had a post-radiation scan at MD Anderson on June 16th and got the results the next day that unfortunately the cancer had spread to new areas. I now have more nodules in my lungs, one in my left bicep, one in my abdominal wall, one in my liver, one in my L1 vertebrae, and one in each iliac bone. We were hopeful that the cancer was only in the places we knew of as of February, and that the radiation we underwent might beat back all the known cancer, but unfortunately there was more that grew outside of the radiation path. This was very disheartening news in general, but exacerbated by the difficulty and pain that we experienced following my radiation therapy. Until now, while the cancer was already stage IV, it was still relatively limited. It feels much scarier when it is that spread out in your body. The good news is that all of the metastases are still quite small, and the overall amount of cancer that I have is fairly small. As for what the radiation did, the lung nodule is less bright on PET scan and the primary tumor in my esophagus is also less bright. With the inflammatory response that accompanies radiation damage, it is still too early to discern the full effect of the radiation to these areas. But, this dimming on PET scan means at a minimum that the cancer was hurt and my esophagus wall is thinner so the cancer there has shrunk. Otherwise, I have some residual, mild lung inflammation from the radiation, which manifests as an uncomfortable cough which should go away in time.
Where we’ve been since the last update:
We finished chemoradiation on April 8th in Houston at MD Anderson. Radiation was mainly just tiring as the cumulative dose affected my body, but it also led to some eating trouble. Around day 10 of the 28 total treatment days, I started to have some esophagitis which made swallowing painful. Radiation takes a toll on your body, so you have to eat extra to offset the damage. At that time, I was eating 3500 calories a day and still losing 1-2 pounds each week. The esophagitis worsened, and by the end of treatment I was only able to tolerate a liquid diet. We had been warned that these symptoms could increase in severity in the 10 or so days following completion of treatment, and mine definitely did. In part, this worsening was due to my inability to consume enough calories due to the pain and all liquid diet. Over these 10 days, I was mostly living on protein shakes, but oddly shakes that didn’t hurt initially in this period became unbearable so we were wearing out different stores trying to find formulas which I could tolerate. This degraded to the point that I was only able to consume 1-2 shakes a day for between 230-460 calories per day. Obviously, this was nowhere near enough food. We tried pain medication but this did not help me eat or drink any more than I was already choking down, so we knew we needed more help. I spoke with my radiation team and nutritionist at MD Anderson, and at this point I had been only eating 230-460 calories a day for what ended up being around 3 weeks. I had lost 33 pounds since starting radiation back in February, and I met criteria for severe malnourishment. We got a temporary tube placed down my nose to bypass the injured esophagus and stomach and began tube feedings. This was a tremendous Godsend. Literally overnight, I was a different person. Thankfully, the home health company that managed all our tube and feeding needs uses the same types of feeding pumps that Amy used to use as a nurse in her ICU days, so she was very comfortable handling all my new nutrition. I had the tube for just under 3 weeks, and over the last week of this period I began to be able to swallow solid foods around the tube and slowly weaned the tube feeds and upped my regular food intake. Thankfully, I was able to get all the calories I was supposed to by mouth without significant pain or difficulty. So, I pulled the tube and thankfully have been eating and drinking normally ever since. The biggest downside to this complicated course was just how much it wore on Amy to see me in that much pain just trying to drink a sip of water and just how helpless we felt trying to feed me to heal me but being unable to do it. Beyond that, that low level of food for so long really sapped my energy and stamina and muscles. Much of this has come back such that I can do chores around the house normally whereas before I would be so tired as to have to nap after just one flight of stairs or bringing one bag of groceries into the house. I am not back to where I was before the radiation, but I am much more normal now than I’ve been in quite some time.
Where we’re going:
I have an appointment with the MD Anderson doctor who screens patients for Phase 1 clinical trials on July 6th. There are a few trials that my primary oncologist there is hopeful that I will qualify for, but we won’t know more until after this visit. My other option would be to try 3rd line chemotherapy of Ramucirumab/Paclitaxel. We are just trying to get knowledge of all of our options before we are able to make a decision. We are praying for wisdom for us and all of our doctors in these decisions and would love to have you all praying the same with and for us.
Cancer is horrible. This week has felt like repeat tsunamis of varying emotions and exhaustion. MD Anderson still has to have tremendous Covid restrictions for their immunocompromised patients, which means I go to all of my appointments alone and Amy is waiting alone in the hotel. I haven’t realized before how difficult it is to get news like I got at this visit, that the radiation didn’t attack all the cancer like we had thought, that all that starvation and pain might not have been so worthwhile after all, that for the first time the cancer is spread more diffusely throughout my whole body, and then to set aside the swell of emotions to try to understand what my treatment options are and what might be beneficial all the while dreading calling my wife to break the news to her while she’s alone in a hotel room and I have to go to other appointments and cannot go to be with her immediately.
Fortunately, I was able to get back to Amy a little over an hour after the news and we were able to embrace and cry and pray together. What do you say in moments like these, with so much unknown, such surprising news, such dashed hopes that maybe the radiation beat the cancer back? By the grace of God in the Spirit I managed, “If Jesus is King and if he’s on the throne, then this will be ok.” We can’t put our ultimate hope and trust in chemotherapy or radiation or clinical trials. If Jesus is King and on the throne and our Lord (spoiler alert, he is for sure all of these and more) then sickness and suffering and pain and even death can’t kill us. Cancer is horrible and dastardly and one of the most blatant evidences of the brokenness of this fallen world that I’ve ever encountered. The good of standing on Christ as your foundation for all of reality, is not that there will not be suffering or storms or waves, in fact, these are promised to those who follow Christ. It is that you will not be toppled by them. Hurt by calamity, yes. Mourn sickness and bad news, absolutely. But ultimately this cancer and anything else that could come our way cannot undo what Christ has done. Our sin was dealt with in his own body on the cross, he is alive forevermore, and as the single greatest authority and power that exists, he has promised us new life with him forever, where there will be no tears and no sickness and there will be fullness of joy. Matthew 7:24-27 says,
24 “Everyone then who hears these words of mine and does them will be like a wise man who built his house on the rock. 25 And the rain fell, and the floods came, and the winds blew and beat on that house, but it did not fall, because it had been founded on the rock.26 And everyone who hears these words of mine and does not do them will be like a foolish man who built his house on the sand.27 And the rain fell, and the floods came, and the winds blew and beat against that house, and it fell, and great was the fall of it.”
So then, Christ is our rock, and anything else we could put our confidence in, modern medicine, cutting edge therapeutics, heath, ALL other ground is sinking sand.
“So we do not lose heart. Though our outer self is wasting away, our inner self is renewed day by day.”-2 Corinthians 4:16.
Please pray for us and our families, we are weary, still hurting with this news, weighing options of what might be best going forward, and imperfectly seeking to follow and make much of Jesus. We have been overwhelmed with support and love and help and prayer since we heard the news and it spread through some of our circles. We have felt much more peace and comfort from our Lord as his church has been informed and been so earnestly praying for and with us. We are forever grateful to be known and loved by so many and to have such help in this trial.
May the grace and peace of our Lord Jesus be upon you,
- Sawyer & Amy
