When we last left our cancer patient, she was nearing a peak of the roller coaster after a particularly moving worship service. But as we know, what goes up must come down…
When Dr. Penley walked into the exam room on Tuesday morning for my scheduled appointment, his exact first words were, “Boy, did I do a number on Sara Walker. I am so so sorry.” He went on to say that my skin reaction was one of the worst he’d ever seen. For that reason, we were going to be unable to continue vectibix as a course of treatment, at the very least at the current dosage. He said he wanted me to come back in one week and if the skin has healed enough, we may continue vectibix at a lower dosage. If it was not sufficiently healed, we would have to eliminate vectibix as a treatment option, and we would be moving straight into Phase 1 and/or Phase 2 trials, depending on what is available.
We then spent a considerable amount of time just talking – talking about other options for pain management, since what I am currently doing is not working well for me/making me functional; talking about the benefit of an anti-depressant, talking (at my request) very calmly about how one dies from colon cancer and what the end is like; talking about alternative cancer treatment options; etc. Once again I was reminded how much I like his bed-side manner and am impressed with his knowledge. It was easy, compassionate conversation.
Another nurse came in ask questions that conclude the other clinical trial I am now finished with, and she said, “Wow, this was all just from one treatment of vectibix?” Yes, lucky lucky me. Remind me again just how rarely unfortunate this is.
I left the office, not having treatment of course, and knew that I was just barely keeping my composure. As I sat in the lobby waiting for my mom to come back and pick me up, I decided to listen to my ipod, thinking music would help calm my nerves. Unfortunately the song that immediately started playing was a very happy, playful song that is attached to a very strong memory for me. I remember singing the song with the boys in the back yard one beautiful spring afternoon in 2010 when I was pregnant with Anna. I remember thinking that day how happy I was, how blessed I was to be home with my precious boys, how excited I was about our baby girl on the way, how wonderful my life was.
So as that song began playing in the lobby of the Baptist Medical building, the tears erupted. It is so difficult for me to go back in my mind to those happy days before my nightmare began. I had so much joy, so much peace, so much to live for and enjoy. I can’t even imagine at this point ever feeling like that again. Oh, I can find things to be happy about now, find things to smile about, sometimes I laugh (although that now causes pain), but it is SO HARD. I know, I am the same one who wrote about the sweetness of life, about savoring. Know that I fully meant those words at the time; life did have a special sweetness to it in those early months. Know that I am still trying, I am still attempting to find things to savor in each day. And God still provides them. But it is SO HARD to do, and there is a constant black cloud of sadness lurking in the background that can’t be dispelled even in those better moments. This burden completely weighs me down. I am completely broken now, completely empty. My hope is a dim, barely flickering candle light, burned down almost to the wick. By God’s grace, it is not extinguished completely yet.
I sat in that Baptist lobby and watched pregnant woman after pregnant woman walk by, I watched newborn after newborn go by, and I sobbed. I wanted to scream – “Do you know how blessed you are?!” “Do you know how blessed you are to be getting little sleep at night because your baby has the life force to scream at you and tell you they need to eat?!” “Do you know how blessed you are to have difficulty getting up and down from a chair because you are carrying a healthy full-term baby in your stomach?!”
I am not angry at those women, at those babies. I am angry at sin, which brought this suffering into the world; I am angry at the dark powers for waging battle and occasionally gaining ground in the battle for my mind and thoughts. I am confused. How did this happen? I was completely healthy. I have lived a completely healthy life.
And then God saves the day again. His words have infused life into my soul again. Simply spending 5 minutes reading the Word, and I am reminded – “Sara, you don’t know anything. You are not God. You did not create this world or anything in this world. You do not fully grasp My power. One day, one hour at a time. That is all I need from you. I will get you through this next hour. Just be still.”
Lately I have been trying to meditate on the phrase, “The Lord your God goes before you.” That is currently more comforting to me than the idea of him by my side, or of his carrying me; both of which are very true too. But I am greatly comforted by the idea of him clearing the way before me. Taking the brunt of forceful attacks and shielding me. I would rather be no where else than in his shadow, under his wing.
The Lord provides daily: I have been blessed to spend some precious time with dear friends in my home, helping to pass the time, distract my mind, encourage me. I have been able to cry with special sisters who have fought the same battles. And here’s some providence for you: literally just one week before my skin reaction started, the Lord allowed me to develop a friendship with a woman in our church family who is a nurse in dermatology. She has and continues to be a wealth of helpful information AND supplies also as I continue to try and treat my skin.
So, now that I’ve unloaded emotionally, here’s the rest of the details.
MONDAY I go to the Sarah Cannon Research Center to be evaluated and educated on what clinical trials they have that I am appropriate for.
WEDNESDAY I go back for a second opinion with Dr. Berlin at Vanderbilt (who I saw just before ever beginning treatment back in February.) I will see if he has any other ideas and also find out about what trials Vanderbilt has going on that might fit my case.
THURSDAY I am to go back to Penley and determine if we will continue to try vectibix in the interim or not.
I have not yet started an anti-depressant but will probably start it in the next week or two.
My skin is healing slowly, my pain is manageable though with more pain meds than I would like, I am eating moderately well though still have almost no appetite. I am trying some extra alternative supplements that Dr. Penley signed off on and am hoping to start some juicing in the next week. (My juicer is being delivered today I think.) I can get out a bit but it really fatigues me.
Please know I have taken your suggestions and looked into all of them. Some we are trying, some we don’t feel is the right time to try.
I know my posts have been very down lately, but please do not worry that I am suicidal or have completely given up. There is just not a whole lot to jump up and down and scream with delight about lately. I still believe that day may very well come. Know that my prayer now is just for this to be finished, one way or another. I pray that if He doesn’t intend for me to live, that He will take me home today. I pray that every day. (I’ve prayed that every day for over a week and I’m still here, so hmmm….. 🙂 But I also pray that He will show mercy, put His power on display, and come quickly to heal His child.
As you pray, I hope you will pray the same. And that you will pray that He direct us into our next steps of treatment / no treatment / trial / etc. I could also use prayers for gut motility, if you get my drift. Having to take extra pain pills is making that a huge challenge.
Thankful for God’s faithfulness, for your diligence in prayer, for the ancient holy words and the power they have in my heart, and for this day.
– Your Sara