Dancing in the pain

This Christmas I decided to ask for a guitar. I have always wanted to learn to play but I never had a guitar that was small enough for my hands, nor have I ever really had time to learn to play. While medical school and residency are not the best times to be picking up a new instrument, I figured this spring and summer I would have more time to learn than I will in the next like 3 years at least. So Christmas Day I opened a junior Yamaha guitar. I spent my 2 weeks off of school to practice some easy common chords, and I tried playing them in simple worship songs. I've missed making music. Singing is great but, at least for me, I don't feel the music as deeply as I do when I'm making the music and singing to it. I don't have dreams of playing for a worship band again as I did once playing the drums. I don't even really want to play for my friends and family. Honestly as I thought about what to 'get' this Christmas, I wondered what I could give back to the God who gave me everything. And all I wanted to do was sit outside, make music, and sing to Him. I've gotten this guitar out several times and just played a little, but when I brought it with me to Memphis and set it in my room for the month, I wondered why in the world I had lugged it along. Yet one night this month I was very glad it was here. 

Death is a hard thing to deal with. Not only coming to terms with the physical absence of a person, but also facing the mortality of your own fleeting life. So many of the children I have met this last month unfortunately are very aware of their mortality. When I started this rotation I had this panic moment where I really asked myself why in the world I had signed up for this. Part of me thought it was because it's St Jude and how can you not sign up for an opportunity like this? Part of me thought it was so that I could see how these horrible things start so that I know what to look for in my own practice so I won't miss anything. But the more I thought about it, I think deep down I know that I need exposure to hard situations so that when I face them later I will be better equipped to handle them. I don't like cancer, and I don't like death. But inevitably, I will at some point have to have those awful conversations with unsuspecting families. I want to be able to process things now while I'm not in charge and I can take time to think through it. 

St Jude has been a wealth of knowledge in many ways. And I have learned much about handling difficult situations. Unfortunately, I also began learning how to deal with the death of a patient. We tried to get her home to die around family and friends. But things progressed more quickly than we expected. When we went to see her she didn't look good but still talked to us and even blew us kisses as we left. But I had a feeling she wasn't going to be with us long. That night as I prayed for her family I asked for mercy. Yet, as I prayed knowing they do not know Christ personally, I realized maybe God needs to allow it to be hard in order to bring them to Him. So I have been praying for God to use it all to bring them closer instead of pushing them away. If they need to hit bottom to look up, Lord help them find the bottom. 

I didn't have time to process her death for several hours. We had many other big things going on, and most of the day was a whirlwind. That night when I got home I ate, took a shower, and though I wanted to just pass out on my bed, I got out my guitar. And I realized God had given me this guitar for moments like this. Moments when my heart is overwhelmed and can't even understand everything. Yet, I could worship, and worship I did. Just me, my guitar and my all sufficient, and perfectly good God. More than my words could have helped me express my feelings, I sang about redemption, and grace, and going home. For a moment, I could leave the hard sciences and be one with the music that allowed my heart to dance. . . To dance before my God. 

The Beauty in the Ashes

I remember watching my aunt care for her little brother. My uncle had very bad diabetes and my aunt fought hard to make sure he got the best care possible. When he went for his transplant evaluation at UVA I heard my aunt made several employees mad by the way she fought for him. She was scared and trying desperately to give him this last chance at a better life. Watching how she loved him, and how she just wanted the best for him, has given me better insight into the fears faced by these families as they watch their children suffer.

I met a father this week whose son had just been diagnosed with cancer. He is terrified that his son may be ripped away from him. He is at the best hospital in the world for his son’s cancer, and they don't have to pay a cent. Yet, since his arrival, Kevin has not ceased to push back at everything done to his son. He questions it all, asks if things can be done a better way, and is not afraid to let you know he is very angry. To the staff he is rude, belligerent, and seams to even be a danger. But all I can see is his fear. His son's cancer is not the worst kind he could have, and he has a decent chance at survival. But does that really matter? He is scared, alone, and angry that it had to be his son in this hospital bed.

I have come to find the medical community in general is much better at treating leukemia than solid tumors. Most of the leukemia patients had a pretty good chance at survival even if they were high risk leukemia. I mean, even if all else failed there is bone marrow transplant that gives hope even when nothing else works. It’s awful to watch these children suffer in the present but there is much hope that it is only temporary, and that someday they can lead a somewhat normal life.  But for brain tumors and kidney tumors, and bone tumors, the challenge is much different. Many children don’t receive a diagnosis until the tumor is in advanced stages. I do realize that the snap shot I have is a unique subpopulation of the worst cases of solid tumors in the country or even the world. But so far these cases seem much worse.

My first day on solid tumor I not only noticed the severity of the cases we were dealing with, but I also notice the major difference in the staff that work with them. There was a certain level of stress as expected, however, almost every NP, fellow, and attending I have worked with on solid tumor have a different level of hardness about them. Every day this week has been met with short remarks, cursing, and bad attitudes. At first I thought it was just the personality differences, but I really think it’s almost a coping mechanism even for these staff members. I cannot even imagine how difficult it is to continue to care for someone and their family, to go through all the complications with them, and all the emotions, knowing that all you do is not enough to prolong their few years on earth. I found myself getting frustrated with the staff, and wishing I could work with other people. But thankfully God gently reminded me to look at everything through their eyes. It is much easier to take in all they say and how they act when I take myself out of it. Don’t get me wrong, every one of them is excellent at their job, and they can turn off all their emotions and frustrations the moment they walk into a room. They bring wonderful care, but it takes a major toll on them and likewise I am sure it affects their families as well.

All week I wanted to point out to my superiors how this poor father mentioned above does not mean to be so offensive in how he has been dealing with them. I wanted to ask them to just sit and listen to him, to explain things better, or maybe just give him some time process. I wanted to ask them to take a step back and look at everything through his eyes, but I also knew that to do so, for them, might be too much. Everyone is coping their own way the best they know how. Thankfully, as the week has progressed, tension has settled and things with this father are better, but this won’t be the last time this situation occurs.

And then there is the issue of pain. As a profession we can fix pain, at least we can make it so that you don’t have to feel pain. But, it comes with its caveats. The delicate balance between taking the pain away, but not sedating the patient to the point that their family can’t talk to them, or to the point that the patient is not even aware of life. I have seen in these few weeks that children are so resilient. Through the worst of their disease, we can keep their pain away or at least tolerable, and if things are really bad, then they stay asleep the whole time and have no clue what’s going on. So many children can bounce back from chemo and even bad complications and go on to live normal lives. But, it’s the parents for whom my heart has been breaking these weeks. Day after day they sit and watch their child’s body battle. And sometimes it wins, and sometimes it doesn’t.

Needless to say, this week has been very difficult for me. It is hard to face these challenges each day. I find myself in prayer most of the day. Praying for mercy, for peace, for hope, for strength and endurance; and yet, in all the sadness I do see so much mercy. I stood praying for a young child as the thought occurred to me, “he seems so innocent, what did he do to deserve this?” and that still small voice, “Oh, my child, you all deserve this and so much worse. It is only my mercy and grace that confine this devastation to so few families. And even now, I have not forsaken them. I hear their cry, and I hurt with them.”

I am reminded of Hagar in Genesis 16, as she is fleeing from Sarah. There by a fountain of water God met with her. She was told that she would have a son, and that she should call him Ishmael, “Because the LORD has given heed to your affliction (verse 11c).”  She then called God his name El Roi, the God who sees me.

Sometimes I forget that at the same time that God is powerful, and holy, and just, that He is still perfect in His mercy, grace, and love. I can see the mixture of these attributes in these families at St Jude. His justice in allowing the consequences of sin and evil in this world wreak havoc on every human born in Adam, yet at the same instance his mercy in limiting this pain not only in the number of families who deal with it, but in each individual person watching them and holding them, whether they know it or not. “For they that sow in tears shall reap in joy” (Psalm 126:5). “You have taken account of my wanderings; Put my tears in Your bottle. Are they not in Your book” (Psalm 56:8).

God really is in control. In all His majesty and splendor, He alone can make beauty form the ashes. He is opening my eyes to more of the evilness of sin and the curse of death, and it is painful. It hurts and it cuts deeply. Yet, in seeing and growing in this knowledge of good and evil, I can say I hate sin more than I ever have before. And therefore, I see more of a glimpse of the awesomeness of God’s love, and my love for Him grows in exchange. The beauty in the ashes.

Finding Cures. Saving Children. St Jude Children's Research Hospital

This past week I made the 8 hour trek across the great state of Tennessee. Granted with family in Knoxville and in Nashville it took me 3 days because I had to stop and take advantage of seeing them. But Sunday evening I rolled into midtown Memphis. I’m not usually the sort to stay with random strangers (except almost all my trips to Africa). But, it is completely different when you know those strangers are in fact your brother and sister in Christ! Actually it makes ALL the difference. For the month of January I will be allowed to ‘work’ with hospital patients at St Jude Children’s Research Hospital. And if that wasn’t enough grace from God, He has also provided a wonderful family for me to stay with free of charge AND they even let me eat dinner with them free of charge. Like a free home cooked meal that I didn’t have to cook! I’m pretty sure every morning and every evening I sincerely thank God for each of these amazing blessings. Like I have told my sister before the big 3 for a college student or single post-grad person are 1: a warm bed 2: food 3: a place to do laundry. Jennifer graciously provides 2 of the big 3 for me on a semi regular basis for which I am eternally grateful. However, the King’s have stepped it up and have actually provided all 3 of the big 3, and I am still in amazement at their generosity!

Monday, I went to St Jude for the first time and spent all day in new employee orientation. And with it being the first Monday of 2016 there was quite the crowd.  Unfortunately, much of what they went over did not apply to me as I would not actually be receiving a pay check from them, but I did receive a really cool official St Jude bag! Tuesday I joined the inpatient leukemia team as they were doing morning table rounds. Talk about overwhelming! I realized very quickly that all of these patients are extremely complicated, and I knew I had jumped into the deep end! But as the day progressed the Heme/Onc fellow very kindly explained a lot to me and broke things down to where I could almost wrap my tiny little brain around them. Yet when I heard my attending tell her to assign me 2 patients because I was “qualified to see them” I was again terrified and questioned any sort of “qualified-ness” about me! But as with many things, once you make yourself jump in there and do it, things start to get a little easier. I have now had 2 days of successfully following my 2 patients and I have learned quite a lot. Although I still feel like I don’t know anything, so don’t ask me questions just yet!   

What has impressed me the most, however, of all the things I have learned (thus far) is what I have learned about St. Jude the institution. I always thought of it as a hospital that does research but it’s much more like a research institute that happens to have a hospital on site. Most of the buildings at St Jude are for research and I would venture to say most of their employees are scientists and not doctors or nurses. Actually, I felt a little out of place at orientation because most of the people were researchers or business men and things. Anyway, it was nice to see the amount of effort that was being put into researching childhood cancers. When St. Jude was opened in 1962 the survival rate for childhood leukemia was like 4% in just 20 years it jumped to around 75% and today it is at 94%. And even more amazing is that with a DAILY budget of 2 million dollars, all funds are raised by grants and outside donors (through ALSAC the American Lebanese Syrian Associated Charities). Patients do not pay a penny for their treatments at St Jude. It’s pretty amazing! On site they have a little mini museum telling the history of the founder Danny Thomas, the history of the research advancements and awards received etc. One of the quotes from a parent caught my eye, “when we looked out of our hospital windows at night the lights in the research buildings were always on, and it gave us hope.” The things being done at ST Jude are truly amazing, and it brings people from all over the world in search of a cure.

I expected this rotation to be really hard for me emotionally. It isn’t the easiest thing to see so many children with such horrible diseases. But, to my surprise there has been a lot of joy and hope. Because we know that for most of these kids we can make them better, and that is exhilarating! I must say though, I have had my moments of hard times. My heart aches for the mother who hasn’t slept in 4 days because her son was just diagnosed with cancer and she stays awake with him all night and all day trying to wrap her head around all that has happened and all the treatments and procedures her little boy is going though. And yet, I am so thankful she is here, because I know her son will be taken care of, and so will she. It has also been hard to see the 1% of cases that are so unique that we just don’t know what to do. With all the knowledge and research we still don’t know everything. And of course, all the most difficult cases of cancer around the world come to St Jude here in Memphis. It has been amazing to sit and watch experts in the field discuss the best course of action in each case and how to adjust them for specific things. And it is incredibly humbling to realize that I am sitting among them. I don’t have an inkling of their wisdom and yet I do have something much more powerful, direct access to the Great Physician.

I was standing in a room today listening to a frightened mother question my attending physician on the course of her son’s treatment. The chemo had given him such bad side effects that we had to stop it and use different chemo drugs that wouldn’t do that. She almost broke down as she asked if these new drugs would change the overall prognosis of her son’s condition. Obviously they were second best to what he had been getting, and she feared they would not cure him. My attending tried for a long time to explain everything to her. That in medicine we must first do no harm and these drugs were harming him, but it is a fine line between harm and benefits. After a while I stopped listening and just began praying. I know she is scared, terrified actually, it seemed like a lose, lose situation. . .  But God. . . I couldn’t help but think in that moment, ‘Lord you are more powerful than any chemo regimen, and you alone can bring comfort in this situation.’ I realized that no matter the advances in cancer research Christ is still the best medicine. Deep down He is who everyone needs no matter what they are facing. Even with the best cancer care in world and the best cancer research in the world, it’s not enough for the cancer patient without Christ. They may not know that, but it is so true. And so obviously they all need our prayers; but not just the ones at St Jude but the kids with cancer in Brazil and Honduras and Finland, and Zimbabwe, and next door. They don’t all get the best care, but they can all have the Great Physician. So then, can’t we all be physicians in some regard, praying for the Great physician to bring healing? That’s the best weapon I have against cancer, and we can all fight with it! Oh to contemplate the power of prayer, and yet I tap into that great power so little for all the people in my life. Can you imagine if any of us actually prayed without ceasing? If I, as a physician, could live in an attitude of prayer such that it saturated all my patients, what amazing things could I see God do?

That is what I am learning at St. Jude. . . thus far J