When I think about all that’s taken place since last I wrote, several words come to mind: exhaustion, sadness, heartbreak, fear. But there are others: mercy, love, peace, grace! As trite as it may sound, God always provides an escape. What a great and mighty God, the One who balances the universe! You may be wondering what real good can be found in Daniel’s world; well, there’s plenty, and we’ll get to that later. But first, a few of the highlights . . .
After Daniel’s last discharge from Vanderbilt, he had several good days. His pain was largely controlled, and he received IV fluids daily. Talking was minimal, but he was blessed to share with a couple of friends with his pen. On the night of Wednesday, October 8, he hardly slept at all. The next morning we gave him a medication that the doctor had suggested might help him rest; it was also expected to relieve his severe myoclonus, the sudden jerking you sometimes experience as you are about to fall asleep (in Daniel’s case possibly brought on by pain medications). Unfortunately, the drug made him confused and afforded him very little sleep. All day Thursday he struggled with this effect. On Thursday evening we noticed that Daniel’s breathing wasn’t quite right; there was a distinctly different noise as he exhaled. We observed him closely and decided to wait and see. In the early hours of Friday morning, we felt Daniel had not really improved and opted to take him to a local ER. The first and most obvious problem was his oxygen level. It was only 78 and well out of the normal range. While we were there, the doctor gave Daniel a medicine to reverse the effects of the "sleeping" pill. She also ordered oxygen for home. Daniel left the ER with an oxygen tank and feeling much more alert, yet spent.
The next several hours were key, as Daniel continued to feel horrible. He had no energy and, while more lucid, was too tired to communicate most of the time. By Friday evening and with the help of a dear friend who came to examine him, we decided that another quick ER trip might be in order. Good call. A chest x-ray was ordered, and the doctor carefully and gently explained the results to us. A large volume of fluid was compressing one of Daniel’s lungs (pleural effusion), and it was believed to be a product of the cancer. He had two options: he could do nothing and eventually die from not being able to breathe, or he could have the fluid drained. The doctor explained that most likely the fluid would return anyway, and Daniel would, at some point, have to decide when to stop having it drained. I find myself at times like this waiting to hear about choice C, but it was never offered. After asking the family’s opinion, he decided to try the drainage especially considering he was still taking chemotherapy. After all, what IF the chemo actually worked this time? The doctor also explained that draining the fluid should improve Daniel’s breathing, at least for a while.
The procedure was set for Saturday morning. It was a great success; the doctor removed approximately two liters of fluid. Daniel felt better almost immediately.
The doctor told Daniel that the fluid was beginning to reaccumulate by the next day, so on Monday the procedure was repeated resulting in the drainage of almost another whole liter of fluid. The doctor was kind enough to let me stay in the room during both procedures and help hold Daniel. What an honor! He barely had the strength to sit up in the bed while the needle was placed. He leaned forward and held onto me sometimes grabbing my collar as he began experiencing intense pain. As soon as the doctor was finished, he ordered a chest x-ray to confirm the source of pain. Unfortunately, during the procedure Daniel developed a pneumothorax, a puncture of the lung, which caused air to escape into the space previously occupied by the fluid. Only the lower left lobe was affected, and the doctor explained that Daniel would need to have a chest tube inserted into the space to allow the air to escape. The procedure and its possible complications sounded rough for someone in Daniel’s physical condition, but the doctor had given the worst-case scenario. Daniel had to decide whether to have the surgery locally or return to Vanderbilt. After brief consideration, he said he would have it done here. (He really wasn’t well enough for the trip.) By the way, the level of care Daniel has received locally is equal to or greater than what he received at Vanderbilt; he is being treated by the doctor with whom he practices, and there has never been a kinder, more compassionate, or more competent provider than he. The surgeon was in and out in a matter of fifteen or twenty minutes, and there were no complications. I could hear a pop as the air was released. The tube was left in place to remove the remaining air until the lung seals itself. We soon found out that the tube has a dual function, which is to drain the fluid as it returns. The tube is still in place, and there is no immediate plan to remove it. I called Dr. Gilbert to tell her what was going on, and she said to stop the chemotherapy for now because it hinders wound healing. Of course, this was a disappointment, but Daniel trusts her completely with his care.
Over the next few days, Daniel’s condition improved from the standpoint of breathing easier, but he stayed in bed almost all the time. One evening we helped him out of bed to use the bathroom, and we were all reminded again how sick he really is. He could barely support his own weight. By the time Daniel was back in bed, the look on his face spoke of his excruciating pain – mostly from his right hip. You will remember that the cancer has returned to the right hip in the exact same spots as before, not to mention all the hardware in his hip that can cause discomfort. Shortly after that episode, the decision was made to increase his pain medications, a real mixed blessing. Mixed because on the one hand Daniel has better pain control, but on the other he sleeps most of the time.
Most of Daniel’s doctors have made it perfectly clear that we should focus on his comfort. They tell us he is dying. This is not new information. Daniel posted sometime ago that he was given six to nine months to live. It’s funny how we say the doctor gave a person this amount of time or that. Doctors don’t give time. It is not theirs to give. And surely even the ones who have no faith in God know that. As a friend pointed out yesterday, doctors can tell us what HAS been and what IS, but it is our faith that tells us what CAN be.
We are not deluded by Daniel’s condition. Neither is he. And you will be happy to know that his mind is sharp. But to repeat myself from an earlier post, Daniel has chosen and we have agreed as a family that we will continue to believe in the possibility of physical healing as long as Daniel has breath. While to many folks this may seem unrealistic, naïve, and uneducated, to us it is a way to support Daniel and honor God. At no time have we doubted what God CAN do. What he WILL do is up to Him. But what we MUST do is pray. Tonight we gathered around Daniel’s bed as a family and prayed. A couple of minutes after we finished, Daniel called us back over to his side and said, "Let’s do it again." When I asked him what we should pray for specifically, he said, "Healing; I still want to be healed!" We prayed for his complete physical healing, always respecting and bringing attention to God’s will. Please join with us in this prayer.
A few nights ago, I feared Daniel would be leaving us at any moment, but today I am reminded that he is still clay in God’s hands. Let the Potter work His good will!
Thank you all for your continued prayers. We will be forever grateful for your love.
"Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand." -Isaiah 64:8