Thursday, October 23, 2008
Below are directions to the funeral home:
From Interstate 40, take exit 286. Go north on Willow Avenue. Follow Willow Avenue to Jackson Street (no more than a couple of miles). Take a left on Jackson Street. The funeral home is on the left at the second traffic light.
My family just finished making Daniel's funeral arrangements, and I can tell you it was rough. But if Daniel could have spoken to us, he would have said something like, "You all are wearing me out; just make a decision!" Oh, how he'll be missed. In Christ alone we will stand.
God's best to you all,
Your prayers for Daniel did not go unheard. As Daniel would say, "God has good plans." Please continue to pray for us. Our lives will never be the same.
Funeral arrangements will be posted on this site as soon as I can.
Blessings to you all,
". . . In my Father's house are many mansions." -John 14:2
Sunday, October 19, 2008
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
Friday, October 3, 2008
The doctors never really determined if Daniel had infection in his body or not. At no time was he in renal failure. The bottom line is that they don't really know for sure the source of his fevers. All they could say was that since none of his blood cultures produced anything, most likely he is experiencing tumor fever. Before this visit, we were told his "tumor burden" was not great enough to cause fever, but now that we know he has cancer in other areas of the body, the doctors' opinion has changed.
Daniel was discharged Wednesday afternoon. He's holding his own. He is tired most of the time and is either resting in the recliner or bed, but you'll be glad to know that even though he is hardly speaking right now, with just a glance we know when to get out of his space. You know the look. His pain is well controlled at the moment, and we are all very thankful for that.
As of today, Daniel has taken five of the new chemotherapy pills, and so far we haven't seen any side-effects. We will see Dr. Gilbert again in a couple of weeks for her to assess his situation. We are hoping for progress, of course. Again, she says the people who respond to this drug usually do very well.
Clearly, Daniel is very sick. Dr. Gilbert continues to try chemotherapy because Daniel is young and wants to fight. And even though his medical outlook is grim, he knows where his help comes from. And he trusts Him to be right. Daniel doesn't feel well enough tonight to give me any words for the blog; if he did, though, I know he'd want me to remind you that this world is but a preparation place. In this life, we are only made of clay, but one day we shall be like Him. His question to you would be, "Do you know Jesus?" If you don't, you must not wait to find Him.
2. Mucus cessation
3. Continued pain control
4. Ability to eat and drink
Thanks to everyone who has prayed for Daniel's friend Robert. He is doing great!
God's best to you all,
"My help cometh from the LORD, which made heaven and earth." -Psalm 121:2
Friday, September 26, 2008
The doctor said there is always the possibility that these lesions are infection and not cancer, but she doesn't really believe that. She said she could do a lung biopsy to be sure. But that's not what Daniel wants. Medically, there aren't many options.
Daniel can choose to begin chemotherapy next week (but his body may not be able to handle it), or he may elect to go home with adequate pain control and consider taking a similar chemo in pill form through his feeding tube. He may also decide he's tired and do neither. We will support whichever path he wants to take. Those are tough words to write, say, think, and believe; but they're what he needs.
When I asked Daniel what he wanted me to write about how he feels, he said to tell you all, "We will not stop trusting God to do His will." Oh, what a man of faith!
Daniel and the family need your prayers as we continue this journey.
Please continue to help us pray for miraculous healing.
As a friend pointed out to me, no matter what happens, it will not change the character of God! God is good. He is faithful. He is always right. We will love Him, praise Him, serve Him!
Thank you all for loving my Brother . . .
The most pressing matter is to find and fight the infection in his body. If infection is found in the hip, then the question will be whether to fight it with antibiotics alone or to go back to surgery. If surgery is not required, Daniel can begin chemo soon; however, if surgery becomes necessary, chemo will have to be started later. If the infection is elsewhere, I suppose antibiotics will be the method of treatment.
Our hearts are heavy today, but we must continue to fight with Daniel. He is determined. He wants to continue cancer treatment. We want what he wants. PLEASE stand with us in prayer!
God bless you all as you have blessed us.
Wednesday, September 24, 2008
Since that time, his doctors have done a number of tests to determine if/where he has infection in his body. There has been some disagreement among them, but they finally decided that Daniel should undergo a procedure today to remove some of the fluid that has collected in his hip since his surgery. They can see several pockets of fluid on CT scan, but they aren't sure if it is abscess or just normal post surgery change.
Unfortunately, the procedure was not a complete success today. The radiologist was only able to withdraw a small amount of blood from the hip joint. He told me sometimes the fluid is so thick it cannot be removed with this procedure. They may try another method using a CT scan along with bigger needles than he used today in x-ray. He did send the blood to the lab to be cultured, but he doesn't really expect to get a definitive answer this way. He said surgery may be the only option to remove the infection completely along with more antibiotics. (The surgeon doesn't think the fluid in the hip is infection; we'll have to wait and see.)
While in the hospital, Daniel has continued to have periodic high fevers - one as high as 104.2. His pain level has been off the charts at times, but it is better controlled right now. Since he is feeling so bad and is sleeping much of the time, he has not asked for visitors yet. He hopes to be better soon so that he can see his friends and family.
2. pain control
3. less time asleep so he can communicate better (He really wants this.)
4. Mr. Carroll
5. God to be glorified
Just so you know, Daniel hasn't given up. He's being tried, but his faith remains strong.
God's best to you all,
"But He knoweth the way that I take: when He hath tried me, I shall come forth as gold." -Job 23:10
Friday, September 19, 2008
Dr. Gilbert said Daniel could begin a new chemotherapy regimen today. We came home Wednesday evening with our minds all set to get started. We'd only been home a short time when Dr. Gilbert called and said Daniel had hypercalcemia, a high blood calcium level. It was serious enough that she said we either had to bring him back to Vanderbilt for fluids or he must drink or take into his feeding tube at least one liter of water that evening. She said the condition was caused by the cancer itself and/or dehydration. We had a couple of liters of fluids left from when Daniel was taking IV fluids at home a few weeks ago, so a dear friend came by to start the IV for him. Dr. Gilbert wanted Daniel to return to Vanderbilt yesterday to receive more fluids and a special medication to treat his hypercalcemia. We kept that appointment, and everything seemed to go well. Our nurse cautioned us that some patients develop a fever after taking this medication.
As I said before, Daniel's tongue pain had worsened, so Dr. Gilbert increased one of his pain medications on Wednesday. By yesterday evening, Daniel was quite confused, and we were worried enough to call his doctor. She recommended that he be seen in the local ER since there was a possibility that his calcium level was still too high, clearly a serious problem. She also said it might just be the increased pain medications. Daniel was seen at a local hospital, and the doctor said his calcium level was definitely too high. He was admitted overnight for IV fluids and a diuretic to help rid his body of the excess calcium. His pain medication was also adjusted. He continued to receive fluids throughout the day and was discharged this afternoon. Upon discharge, he had a temperature of almost 101, and that was attributed to yesterday's medication.
By the time we got Daniel home and settled this afternoon, I noticed he seemed hot. We checked his temperature and were alarmed to find it at 103.5. We gave him ibuprofen and then phoned his local doctor. He said if the medicine didn't bring down the temperature within an hour we should call Dr. Gilbert to see if she wanted to evaluate Daniel. Thankfully, the fever subsided. I should say, though, that Mom asked if anyone had prayed about the fever. To be honest, none of us had, so she led us in a prayer asking God to reduce the fever. It's 10:35 p.m. right now, and his temperature is 98.6!
These few days have been eventful and difficult for Daniel. He was so anxious to begin the new treatment plan. I told him it was only a temporary setback. He said, "It's okay; it's still God's show!" Indeed, it is.
Please pray that Daniel will be well enough to begin treatment soon, that his side-effects will lessen, and, as Daniel, says, that God be glorified above all!
God's best to you all,
Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD. -Psalm 27:14
Monday, September 15, 2008
Do you really believe He parted a sea for His people?
Was He the muscle behind the little boy who defeated the giant?
Was He the fourth man loose in the fire?
Did he shut those lions' mouths?
King Darius sure was convinced. Shortly after the event took place, he wrote to all his people:
"I issue a decree that in every part of my kingdom people must fear and reverence the God of Daniel. For he is the living God and he endures forever; his kingdom will not be destroyed, his dominion will never end. He rescues and he saves; he performs signs and wonders in the heavens and on the earth. He has rescued Daniel from the power of the lions."
Since I last communicated with you, the ride sure has been bumpy. As most of you know by now, we made it home from the unfortunate pupil incident without too much drama. I was released from the hospital on Friday and have been resting at home since. The source of my increased mouth pain, my fatigue, and my not-so-normal blood work remained a mystery as we were not offered definitive answers at the time of discharge.
Today, things became a bit clearer. We saw my radiation oncologist who believes that there is resistant tumor on my tongue and probably in my neck. This, at the very least, explains my increased pain. He had spoken with the orthopedic oncologist, and they agree that radiating my right hip, which had been the plan, is no longer in my best interest. Since the orthopedist is certain he removed all the tumor that is there currently, both of them consider it better to proceed with attacking the resistant tumor in my oral cavity and neck along with my lungs (it was mentioned in an earlier post that I have about 10 small nodules in both right and left) first. The hip is not an imminent threat now, but the tongue, neck, and lungs are.
The plan is for me to see my oncologist, Dr. Gilbert, on Wednesday. She has already discussed possible trial therapies. Nothing she has to offer me is considered curative, but she believes we can add to the length and quality of my life possibly. We will further discuss these trial therapies along with a plan for moving forward on Wednesday.
Some of you might expect me to go quietly at this point, which is really one of the main reasons I write tonight. Why is it hard to believe that God can heal me from extremely aggressive cancer when we have no doubt that the same God created this universe? Like my sister said, "God is still so much bigger than all of this!"
I love all of you. Keep praying and believing. It is not naive - it is a chance to interact personally with the one true, living God.
Three times a day he got down on his knees and prayed, giving thanks to his God, just as he had done before. -Daniel 6:10
Thank you for getting on your knees for me.
Thursday, September 11, 2008
For most of the day, Daniel's pupil continued to be dilated abnormally. As the day wore on, though, it slowly returned to almost normal size. The neurologist said there might be one millimeter of difference between the two. All of the doctors who saw Daniel found no neurological problem and no evidence of tumor behind his eye. The general consensus is that Daniel accidentally rubbed his eye after touching the patch he wears on his neck for mucus control. The drug in the patch caused the pupil's response. After the worries of yesterday, we rejoice at such good news.
Daniel has continued to have tremendous pain upon swallowing today. It took the team of doctors until about 7:00 p.m. to get his pain under control, but they worked diligently, and now he feels much better. He has even talked and drunk water this evening, both of which were nearly impossible earlier in the day.
Since the pupil issue seems to be resolved, Daniel will most likely be discharged as soon as his pain is again under control. Instead of thinking about going home tonight, we could be considering treatment options for a nasty tumor.
As a dear friend often reminds me, there is always, always something to be thankful for.
Thank you so much for supporting Daniel in thoughts and prayers from your homes and understanding that he needs rest during this hospital stay.
2. Mucus and pain control.
3. Continued bed rest when he gets home.
4. Strength and faith to begin new treatments.
5. Everyone who's suffering with an illness.
6. God's will - always.
God's best to you all . . .
"O give thanks unto the LORD; for he is good; for his mercy endureth for ever." -I Chronicles 16:34
Wednesday, September 10, 2008
We were scheduled to see Dr. Gilbert today as well as the orthopedic surgeon (for surgery follow-up and stitch removal). What we had expected to be a normal office visit with Dr. Gilbert quickly turned into something altogether different. While Daniel's vitals were being checked and just before we would have been taken to a patient room, I noticed that his right pupil was extremely dilated (the left one appeared normal). When I say extremely, I mean there was very little blue left. I told the nursing assistant that we needed to see someone right away. The nurse came quickly and looked at Daniel's eyes. She could not hide her worry. Dr. Gilbert came out next, examined his eyes, and told the nurse to set up a CT and an MRI immediately. Her fears, too, were apparent. We were then taken to a room where Dr. Gilbert explained that there could be a tumor behind Daniel's eye or perhaps a blood clot. Always positive, she said it was also possible that he had touched his scopolamine patch (used for mucus control) and then rubbed his eye. I must admit I feared this was just a glimmer of hope to help us get through the tests. Not that she's dishonest. She truly meant that was a possibility; I just didn't believe she thought that would be the case.
As soon as the tests were ordered, the nurse wheeled Daniel to radiology. Actually, she sprinted. Even with my long legs, I had trouble keeping up without jogging! Of course, her sense of urgency worried me more. Daniel made it through both tests, but his pain was moderate to severe. Lying flat on a table for a scan doesn't go well with a mouth full of mucus. We returned to the cancer clinic to hear the results. The CT results were in first and did not show any problems. Praise the Lord! While we waited for the MRI results, Dr. Gilbert sent Daniel to the infusion clinic to receive fluids and a few medications. Soon, she came by to report that the MRI was also negative. Another praise! She stated, though, that the problem was still present and she needed to find out its cause. Daniel had already told Dr. Gilbert earlier today that he needed to be admitted; she agreed and said she would have someone from neurology see him while he's inpatient.
For now, Daniel is resting. His pain is controlled at the moment. It's so good to see him sleep. On that note, I know all of you who can would like to visit Daniel while he's in the hospital, but this time, he just needs to rest. He will look forward to seeing all of you again when he has had time to recover.
Daniel hasn't been able to talk much lately, so I've had to be his voice. I knew on a couple of occasions that if he could speak he would ask some of his caregivers if they knew Christ. I can't say I've always been as bold as my brother in that regard, but I'm learning from him. Anyway, when I felt that I should, I asked for him. While Daniel was getting a chest x-ray tonight, I had a few minutes to speak to the nurse about the Lord. When I told Daniel she was a believer, he raised his hands to heaven in praise. His body is weak, but he is strong in the Spirit. If you know Daniel, you know that none of this is new for him.
God bless you for your prayers.
" . . . the joy of the Lord is your strength." -Nehemiah 8:10
Friday, September 5, 2008
Enjoy this blessed day,
Thursday, September 4, 2008
CT of the brain was negative.
As expected, since oral cancer usually spreads from head to neck to lungs, etc., there are about 10 small nodules in my lungs consistent with metastatic disease.
The abdominal CT was clean other than a possible spot on the liver. It could be metastasis, but it could also be a hepatic cyst, which is pretty common.
This news does not change the treatment plan. As soon as Dr. Gilbert thinks I am strong enough, she will begin my next round of chemo.
More to come later, but I wanted to get this information out as quickly as possible.
Just remember, God is in control, and He is still my doctor - even still. I love Him SO much - not nearly as much as he deserves, though.
One more thing I have to say. I know it's possible that some of you reading feel sorry for me. You wonder when I will ever just accept what the doctors are saying and give up. What God says is what interests me. Trust me, I understand my medical, human outlook - it's about as grim as they come. There is something we must remember, though. God numbered my days and ordered my steps. He will heal me in one of two ways: I will be cancer free or I will be free in Heaven thanks to the sacrifice of Jesus, the beautiful one on the cross.
I love you all. Hope to talk with you really soon.
For those of you wondering, I am doing well where the hip is concerned. It is sore, of course, but I am walking very well with walker or crutches. Sometimes, I almost forget that I need them, so I expect to be back to my normal self where that is concerned very soon.
My most notable physical ailments at the time are my mouth sores and mucus. I know this will seem unbelievable to those of you who visited me in the hospital as I probably talked you into the floor below us. You must understand, however, that I had been given a medicine during surgery to decrease my mucus (a medicine that apparently is available only in IV form) which was very successful. Also, I was on fluids constantly, which tends to help. Finally, I just think God gave us that time together - the most important variable. Since getting home from the hospital, things have changed dramatically. My mouth is flooded with mucus and hammered by sores. I am 4 weeks out of radiation today. The radiation oncologist told me I would be much better in 6 weeks - I really hope he is correct. Right now, I am back to writing notes or typing them on computer. Talking just seems to make the sores hurt worse, and the mucus makes it very difficult, as well.
I had a follow-up appointment with Dr. Gilbert, my oncologist, yesterday. As you will recall, she explained before the hip surgery that with the metastasis, our strategy would have to change from curative to increasing the quality of and prolonging my life. My chances of cure from a medical standpoint went from 40% to 0%. Yesterday, she offered a time frame. She stated that if my cancer "follows the book, and it never has," I could expect to be here about 6-9 months. Of course, since my cancer has been much more aggressive than expected at every turn, that could be a much smaller number.
We then discussed the new treatment plan. I will need focused radiation to the right hip to avoid tumor return there and for pain relief (about 2-3 weeks of treatment). As soon as my energy and strength are improved, I will begin another chemotherapy regimen designed to keep would-be tumors at bay. If these drugs are unsuccessful, there are clinical trials available, as well. Dr. Gilbert stated she has seen these drugs have no effect, but she has also seen them give a patient in my shoes 2 years. If at any time during treatment, the treatment becomes worse than the cancer, we will stop it and do something else. She made it very clear that I would be in control of the process.
She also ordered CT scans of my head, chest, and abdomen yesterday to search for further metastasis.
What I want you to remember is that we already knew the earthly prognosis was this grim. We knew it as soon as we found out about the metastasis. Having a number does not change anything, because no one but God can guarantee a number anyway. Also, while the medical world tells us there's no hope, I'm reminded that with God there is always hope. Remember an earlier post where a friend had pointed out to me that God is my doctor? God is still my doctor! He is unimpressed by the cancer book.
My family and I have not given up hope on our miracle. We know that if God so chooses, He has more than enough power to heal me, and we continue to ask Him for complete healing. We do acknowledge, though, that healing may not be His will. Whatever His plan, know that it is perfect. It may not fit our idea of perfect, but perfect it remains. His glorification matters most. May He be glorified in my life or in my death.
1. My friend Robert is in surgery now (9/4). Pray! Wife's name is Kim. 2 sons. Same cancer as me - caught earlier we hope.
2. Mr. Carroll - battling oral cancer.
3. Relief from mouth sores and mucus - I want to eat real food with family and friends again!
4. Continued hip healing and success with walking.
5. To get to go back to work on some level as soon as possible.
6. To bring glory to the Father each day.
7. Unwavering faith and trust in the One who is mighty to save.
1. God, our Papa, is beautiful, strong, good, and constant!
2. Remember that song, "Oh, How I Love Jesus?" Oh, how I love Jesus!!!
3. God doesn't sleep.
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:34
Thursday, August 28, 2008
As we waited for him to be escorted to surgery, we shared and prayed. We knew God was in the room. The night before we had discussed with Daniel that we would do our best not to cry and carry on as he was taken to the operating room. To remind us of how God likes to work, the lady who came to transport Daniel began praising God as soon as she entered the room. She came earlier than we expected and said the doctor was already waiting for him. She took time, though, to ask if she could say a "word of prayer" first. Quickly, we gathered around Daniel's bed, held hands, and proceeded to hear one of the most heartfelt and beautiful prayers we'd ever heard. Everyone's tensions were eased, and our new friend continued to speak peace to Daniel, Mom, and me as we entered the pre-op holding area. God was in the room.
The anesthesiologists and surgeons were worried that because of Daniel's enlarged neck nodes his airway might be encroached upon, which would make intubation very difficult. The anesthesiologist told us that if Daniel's airway proved to be a problem, he might need to be intubated longer than normal and might even have to spend the night in ICU. Naturally, this was cause for concern, but the anesthesiologist was so personable and thorough that she calmed us quickly. Later news came from the OR that intubation had gone smoothly - no complications. God was in the room.
Waiting for progress reports from the nurse was difficult, but we were blessed to have a whole passel of family and friends supporting us and Daniel here at the hospital and, of course, even more all over the place! Thank you all! After waiting a few hours, we were called to meet with the surgeon. He explained that the surgery went very well with no complications and said that Daniel's hip pain should subside once the surgery pain is gone. God was in the room.
The surgeon said that Daniel will require two to three weeks of focused radiation to the hip to help prevent the tumor's return. He also said he noticed three millimeter-sized spots in Daniel's lungs that had not been seen before. He doesn't know what they represent. We will deal with that later. God will be in the room.
Last night was trying. At one point Daniel told me his pain was as bad as his worst tongue cancer pain, maybe even worse. His pain regimen is being adjusted, and today is a much better day. Those of you who saw Daniel yesterday would be much happier if you saw him today.
Please continue to pray for Daniel's healing. We know that God has all power and CAN heal him completely if He so chooses. I heard Daniel tell someone this week that either way, he wins. While all of us want Daniel to be with us for many years, we know that we have no power over life and death. Daniel has told me more than once this summer that we could die in an accident on the way to the doctor to help me remember that God is always ultimately in control. And, of course, no matter what we face, God will be in the room.
God bless you all for your love and support of our family.
Tuesday, August 26, 2008
Dr. Gilbert and Dr. Swartz (the orthopedic surgeon) both stressed that this is not a curative surgery. The goal is pain control and prevention of fracture, which would be almost inevitable if something isn't done very soon.
Dr. Gilbert also stressed that our goal with my treatment in general has now shifted from cure to giving me the best quality of life for the remainder of my life - however long that may be. She does not attempt to give me a time frame, because no human can do that at this point. Medically speaking, I could have weeks, months, even years. No one, but our Great God can give us an answer to that question. As the song Healer says, "He holds my world in His hands."
Indeed, He does hold my world, your world ... the entire world in His loving-kind hands. Of course, there is no adjective that describes adequately what it feels like to be told that
you are dying. There are plenty, however, to describe the God I attempt to serve, and I would prefer to focus on Him. Loving-kind is one of my favorites. It just has a special ring to it, and it is so true of God's character. There is one who never doubted the goodness of God in the most perilous of times. Job pointed out several things that I have discussed before, but I think it is time to revisit them ...
Man's days are determined; you have decreed the number of his months and have set limits he cannot exceed. -Job 14:5
Though he slay me, yet will I hope in him. -Job 13:15
I know that you can do all things. No plan of yours can be thwarted. -Job 42:2
I would love to write more, and I hope to be able to do that soon, but I need rest now. I do want to leave you with some important thoughts, though.
God is my doctor.
God is not frightened by cancer.
God decided how many days I have, and he has known since Before There Was Time (a great song by Caedmon's Call).
God remains undisturbed in the face of news that can rock us to the core.
GOD IS IN CONTROL.
I love you all - even those of you whom I have never met. I love you, because Jesus Christ loved you and me first. We have talked a lot about a personal relationshp with Christ. Because of that relationship, death (though not preferred) represents gain. In death, those of us who have trusted Christ for forgiveness through His sacrifice on the cross, gain the joy of being in His presence! In life, we have the joy of resting (if we will) in communion with Him every day. As I have asked before, if you don't understand this relationship that He offers, please talk with someone who can lead you to a better understanding of Him. Life is too short to wait. We have no guarantee of tomorrow.
Make no mistake, God is cabable of healing me if He so chooses, and I will continue to pray that He heal me if it is in His will. If He chooses otherwise, He is still my loving-kind Father, and I hope, if you haven't already, that you will make Him yours.
Back to tomorrow ... as one of my favorite old hymns says (and, I may be repeating myself), I don't know about tomorrow, but I know who holds my hand.
Monday, August 25, 2008
Today at 530, I am scheduled for MRI of the hips and pelvis along with an x-ray of the right femur.
I do not believe this is cancer, but I would still appreciate your prayers. Obviously, there is a certain bit of alarm associated with your doctor ordering tests to rule out spread of cancer.
God remains in control, though, and I will place my trust in Him by asking that he protect me from any spread of this cancer. I continue to ask that He heal me completely if it is according to His will, but first and foremost, I pray that He be glorified in my response to this challenge. It's all about Jesus - everything, always.
Thank you for your prayers.
Also, thank you for praying faithfully for the others I have mentioned here. Robert Marascalco now has a Caring Bridge site where you can keep up with his progress. I have added a link in my links section. Please visit when you can. He and his family would be very appreciative.
A dear supporter sent me a card in the mail that said, "Don't worry about tomorrow ... God is already there." I love that! It cited Jeremiah 29:11. Look that one up if you don't know it - you'll be glad you did. Have a wonderful day.
Wednesday, August 20, 2008
The caption says, "God Shines In Our Darkest Moments." The verse says ...
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. -2 Corinthians 12:9
I'm writing a quick note today asking for your prayers. I know you are all praying already, and I feel like a broken record asking. I believe in your prayers, though, and I know you want to know. The second half of yesterday was rough. Today has brought some relief, but I wanted to fill you in on the current challenges. The mucus is about the same, but the mouth sores have been on fire. I have been having to use my numbing medication very frequently. This is particularly disheartening, because I had begun trying to drink some high calorie supplements to help with strengthening. With the sores being more painful, I will have to back off that. I feel like I am making them worse, which will prolong getting back to regular food, and I certainly don't want to do that. Also, I have developed some right hip pain that is no doubt due to sitting in a chair for so much of the day (I have to sleep in a chair due to my mucus and to feed at night).
Please pray for deliverance from these obstacles. I trust what He says - that His power is made perfect in my weakness. I am definitely weak right now, but I know He is sufficient - always more than enough. Thank you for approaching Him on my behalf.
Also, continue to pray for Mr. Carroll. He had his first chemo yesterday. He will have another round today and tomorrow and then a break until next week. Pray that he will not experience difficult side effects.
And, continue to remember my friend, Robert Marascalco. His surgery is scheduled for September 4th. He is in a good deal of pain, but still working. Pray for strength and healing.
Finally, remember my friend Jay's dad, Stan Cross. I believe I mentioned him before. He has lymphoma, not oral cancer, like the others. He is currently undergoing 6-8 months of chemo. Remember him and his family.
Thank you all so very much. You have no idea what your prayers mean to me. I love you, I thank the Father for you, and I hope you are all having a wonderful week.
Monday, August 18, 2008
From left: Angela Sadler, Ray Sadler, Sara Acara, Cindy
Comperry, Me, Randy Smith, Lizzy Smith. Front: Georgia.
That's more than enough appointment recall - let's get to the important stuff. I read a lot in the Psalms yesterday, because it is filled with worship offerings to our Great God like the one used at the beginning of this post. There are so many to choose from. I encourage you to pick out a couple and really sing, shout, whisper, pray, or cry them out to Him today. He deserves our unending adoration - our unending, audible adoration.
Here are a few more selections on which to reflect:
Shout for joy to the Lord, all the earth. Worship the Lord with gladness; come before him with joyful songs. Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations. -Psalm 100:1-5
Come, let us sing for joy to the Lord; let us shout aloud to the Rock of our salvation. Let us come before him with thanksgiving and extol him with music and song. For the Lord is the great God, the great King above all gods. In his hand are the depths of the earth, and the mountain peaks belong to him. The sea is his for he made it, and his hands formed the dry land. Come, let us bow down in worship, let us kneel before the Lord our Maker; for he is our God and we are the people of his pasture, the flock under his care. -Psalm 95:1-7
Better is one day in your courts than a thousand elsewhere; I would rather be a doorkeeper in the house of my God than dwell in the tents of the wicked. For the Lord God is a sun and shield; the Lord bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O Lord Almighty, blessed is the man who trusts in you. -Psalm 84:10-12
I will sing of the Lord's great love forever; with my mouth I will make your faithfulness known through all generations. -Psalm 89:1
Bottom line: I cannot thank Him enough for what He has done and is doing. I simply don't have the words or ability to express adequately how He has come to my rescue in the last few days. I'm glad He can see the heart, and I hope He finds it bursting with gratitude. The road ahead is still uncertain, but as the wonderful old hymn says ... "I know who holds tomorrow, and I know who holds my hand." Thank you, Jesus, for holding our hands even when we doubt your presence.
The Psalm used at the beginning of this post spoke of God forgiving all our sins and healing all our diseases. While I am grateful that He has the power to heal all our diseases and I believe He is choosing to do just that with mine, it doesn't matter if all our diseases are healed but we miss the forgiveness of sins. I know many of you reading this blog already know Jesus as your Savior. I pray that you continue to grow in your relationships with Him. If there is anyone reading, however, who has not begun a personal relationship with Jesus ... please consider His beautiful invitation. Forget what you've heard about Him. Pick up the Bible for yourself and learn who He really is and what He desires for you. Start in John 3. He did not come to condemn. He came to know, love, and rescue us all. He waits with widely opened arms.
1. No surgery, especially on the tongue.
2. Continued recovery and relief from side effects.
3. Protection from nausea and choking as I try to get back to a normal diet.
4. Strength to return to work soon.
5. Mr. Carroll - his first chemo treatment is tomorrow. He is in a lot of pain right now.
6. My new friend, Robert Marascalco, who is also 34 years old and recently diagnosed with tongue cancer. He should receive some important test results today. He expects to be having surgery soon. He has a wife and two young children. Please keep him in your prayers as he begins this journey.Praises:
1. Couldn't begin to name them all.
2. Less mucus!
3. Feeling stronger!
4. The obvious presence of the Father.
6. A family who serves and serves and serves.
7. Extended family and friends who love me so well.
Soak yourself in the blessings of every moment this week. Savor all the wonderful little things. God bless you all.
Tuesday, August 12, 2008
Imagine the sting of Jesus pointing out your lack of faith face to face? How many times have we read this passage and thought the disciples were dull for not trusting they would be okay with Jesus at their side? I know it has crossed my mind. I am often lacking in faith myself, though. How about you?
I've been absent from you for a week now. From your emails, texts, and posts, I know you were all overjoyed that my treatment had come to a close. Indeed, it was and is cause for much joy, and I greatly appreciate your celebration on my behalf. I will not miss chemotherapy infusions. Infinitely more, I will not miss having my head bolted, for lack of a better descriptor, underneath a wicked looking mask to a radiation table. Here, I should pause and praise the Father for being on that table with me every day. I'm not sure I've done that yet, but He deserves it. At first, it was quite overwhelming to lie down on that table, but He quickly revealed that He would be there every day. He was. One of my greatest fears was having a vomiting episode during a treatment as mucus collected in my mouth. I prayed for protection from that - He never allowed it to happen. He was always there just as He had promised He would be. May we never forget His promise in the first chapter of Joshua.
If you count today, it has been 5 days since I had a radiation treatment. Am I elated about that? Absolutely! Praise the Father in Heaven it has come to an end! You might have expected to hear this from me sooner, so let me try to explain where I am now and how it relates to the disciples and their boating incident. I have been warned from the start that the side effects of this treatment regimen would be grizzly. I have shared many of the possibilities with you - severely sore throat, mouth ulcerations, neck burn, neck stiffness, tooth decay, and thick, copious mucus among many other possibilities. So far, my neck has held up really well. I have mildly burned skin, which is looking better every day and never reached the painful point that many patients must endure. My neck is not overly stiff. I do have a severely sore throat when I attempt to swallow. I do have multiple ulcerations in my mouth. I have medication to numb those, and I am tolerating them. My teeth seem to have weathered the storm, as well. The constant mucus production has been my most challenging side effect by far. It is so hard to explain and not a very pleasant topic to read about I'm sure. The best I can do to help you understand is to imagine your mouth producing thick, odorous mucus 24/7. I imagine you must think, "Big deal - it's just a little mucus!" That's exactly the thing, though - it's not a little mucus at all. It is mucus, mucus, mucus everywhere in your mouth all day long. The thickness, the threat of vomiting, and the pain of the mouth sores make it hard to expectorate.
The mucus also delays my resumption of real food, so I remain on a feeding tube. Thankfully, I am maintaining my weight with the tube, so I just have to remind myself that this challenge will pass, as well. My hope is that by the time the mucus has subsided enough to try eating, my throat soreness will have diminished some, as well. I have high hopes of eating at least broths and soft foods by another week or so. Also, since the mucus is so thick and it is still hard to take in enough fluids, I am getting IV fluids every day for the next couple of weeks. We have gotten this set up at home, and it is going well.
Every transition in my treatment process brings major psychological adjustment. Yes, it was great to be home, great to be done with radiation, great that in just a few weeks I could be eating again ... BUT, it was so daunting to think about starting IV fluids at home every day (more tubes!), so daunting to think about never ending mucus that could last as much as 6 weeks, and so daunting to think that though I had made it through treatment a waiting period had begun. I quickly realized that I would have to wait weeks to see when the mucus would clear, when I could eat, when I could get rid of my feeding tube, when I could get rid of my anti-nausea pump, and when I might or might not have to have surgery on the nodes in my neck! Do you sense the anxiety? It was just overwhelming for a day or two, and I must admit, I did not do well. I have sent many of you pleas for fervent prayer over the last few days. I still covet those prayers.
When I opened my devotion today, however, I realized that I had not been exercising much faith over the last few days. Oh me of little faith! Yes, this mucus is the most mind-numbing thing I think I have ever had to endure, but have I forgotten that He is here? Have I forgotten the pain he endured? Have I forgotten that there are others suffering more than I could ever imagine? Have I forgotten that He calms storms?
As it turns out, I'm quite a bit like those frightened disciples. Perhaps I wasn't absolutely confident that He would be the God of this mucus. Oswald Chambers says, "What a pang will go through us when we suddenly realize that we might have produced downright joy in the heart of Jesus by remaining absolutely confident in Him, no matter what was ahead."
Let us believe Him from the beginning of our crisis so as to create downright joy in Him. I would so much rather offer Him downright joy than a lackluster faith. Father, forgive me for where I have had the slightest doubt that you would deliver from the beginning to the end!
With all that said, I do have several important requests for you:
1. Pray for rapid resolution of these side effects. Obviously, the mucus is at the top of my list. I am anxious to get back to eating, working, and seeing all of you.
2. My third grade teacher, a wonderful woman named Faye Franklin, passed away yesterday after battling cancer for many years. Please remember her family (husband Nick and daughters Lora and Holli) in your prayers. She was a very gifted teacher, and she will be remembered so fondly having touched countless lives.
3. Continue to pray for Mr. Carroll. His doctors have found that the cancer involves his chest, as well. He has an appointment tomorrow for next steps. Please remember him, his wife, and his son and family - my friends Brian and Elizabeth Carroll. They have two young daughters, Hannah and Emma. Navigating their questions during this time can be difficult.
Let us not forget to offer praise, as well.
1. Praise Him that radiation is over!
2. Praise Him that He is God of the side effects that remain!
3. Praise Him that He has promised to walk with us through any fire that is to come - from the beginning!
4. Praise Him because He is worthy of never ending gratitude!
5. My friend Bryan Larson continues to make progress. Check out his link if you have time.
Tuesday, August 5, 2008
First, you must share in the joy that I have only 2 treatments remaining! That's right! On Thursday of this very week, I will receive my last radiation treatment God-willing. Do you have any idea how it feels to go from 33 treatments remaining to 2 treatments remaining?! It feels like such a tremendous blessing from the Father of light, hope, love, and peace. I know that you have prayed to Him on my behalf so many times for help making it through these treatments, and I firmly believe that your prayers have been answered. As difficult as the treatment has been, I cannot accept anything other than mine has been less difficult than it would have been without your petitions to the Father on my behalf. I know this to be true, and I am so grateful.
Doug may have shared this with you in an email, but I must also tell you that I was able to go to church this weekend for the first time in so long. What a sweet time of worship I had! I praise Him for those sweet moments. Oh, if everyone could understand and believe just how real and wonderful He is.
I do have a special request as I transition into the next phase. After treatment ends this week, I will enter into a waiting period of sorts. I will be waiting for side effects to decrease and for my appointment with the surgeon to see if he thinks any surgery is still warranted. I won't have an appointment with him until the end of August. That will be a preliminary examination. Then, about 3 weeks later, I expect to have a CT and more definitive plans to be made. I ask you to pray for my faith to have strong legs. I want to trust Him more than I ever have in my life. That is what this requires and that is what He deserves. I have gone back and forth on what to ask for specifically where surgery is concerned. Certainly, I ask you to pray that none is required for my tongue. At first, my medical common sense wouldn't allow me to ask that none would be required on my neck either (a couple of lymph nodes remain very swollen), but I am trying to remember that if He can create this world, he can shrink my neck even after the treatment has ended. He is the Great Physician, and we must not forget that no matter how much knowledge he entrusts to us. Pray that surgery won't be necessary, but that His will be done and accepted with steadfast faith - not my own.
One more thing I need to tell you today. In typing a response to a message from a friend earlier, I was reminded of something that I have said so many times throughout my life. He has never failed me. He has never failed me. He has never failed me! Truly, He hasn't! He won't now.
He won't fail you either.
Two more prayer requests: Don't forget to pray for Mr. Carroll as he deals with oral cancer of his own. Again, it is in his bone, so it much more involved. He must have all his teeth removed before starting chemo and radiation. You can imagine the prayers for strength that he needs.
Pray for my caregivers at Vanderbilt. Pray that I would be bold in sharing my faith with them during these last few days of treatment.
Verses sent to me by a dear Aunt in a card:
Because he loves me, says the Lord, I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation. -Psalm 91:14-16
Saturday, August 2, 2008
Tuesday, July 29, 2008
Praise: I saw Dr. Gilbert today, and she believes the tumor is smaller and continuing to respond to treatment. She does believe that I will have to have a partial neck dissection since the swollen lymph nodes are not shrinking on the left side of my neck. She cannot say whether any surgery will be necessary on my tongue, but we are praying that it will not. She was very encouraging and is pleased with my progress other than the swollen nodes. I have 7 radiation treatments to go, and after that, will see Dr. Netterville, the surgeon, in about 4 weeks for further consultation. It is comforting that both Dr. Gilbert and Dr. Cmelak (radiation oncologist) think the tumor is responding. Of course, we must not forget, God is the Great Physician. He knows the plans He has for me. He is here. I pray and ask you to pray for no surgery on my tongue, yet not my will but His be done. As for my neck, I would prefer not to have surgery there either, but I have much more peace about that possibility. Pray as the Spirit moves you.
Request: I mentioned a good friend's dad, Mr. Carroll, in a previous entry. He found out Friday that his cancer is stage 4 with a 40% cure rate. Surgery is not an option at this point as the cancer is more advanced than first expected. As I mentioned before, it involves his bone. He just learned that he will have to have all of his teeth extracted before treatment begins. I urge you my faithful brothers and sisters to pray for him boldly. He has much to face, but we know that God is bigger than it all.
Every day we go to treatment, there are reminders that there are people suffering even more than I can imagine. Most disconcerting is the apparent lack of social support in many of the cases. It is heartbreaking to see people going through this alone. They need our prayers.
Let's pray together tonight ...
Awesome Father, You are worthy of receiving our utmost in praise and honor. You knew us before we were ever a worldly thought. You knew how our lives would unfold. You knew how we would respond to that unfolding. Now Lord, in these times found uncertain by us, steady us by Your great power and sovereignty. Let all of us who fear, draw near to Your comforting Spirit. May we never forget the price that You paid to cleanse our hearts and purify our hands. May we never forget that our suffering will never come close to Your suffering on our behalf. May we never forget that You are more than enough and that You are always here. May we remember in struggle, that the goal is still to know You and to know You more deeply. May we be moved into deeper relationship with You as we trust in Your great plans. Give Mr. Carroll complete healing and give his family a double portion of Your graciousness as You carry them through this journey. We love You. Your goodness cannot be described. Amen.
Monday, July 28, 2008
Tonight, I am short of words, but did want to pass on a few thoughts about Father.
When drowning in mucus, He holds me.
When mouth ulcerations blaze, He is here.
When vomiting attacks, He stays till the end.
He is mighty. He is true. He is loving-kind. He is holy. He is worthy of desperate praise. He IS.
I love Him, and I pray for complete healing in my physical body along with the healing of broken lives through His redemptive power.
For those who read these words and have not begun a personal relationship with Jesus, I plead with you to consider embarking on the greatest journey of your life - an everlasting journey. He loves you and wants to walk with you. Don't turn Him away. Read John 3 and Romans 10 - they are great places to start. Talk with a trusted pastor or friend who knows Jesus as Savior. Whatever you do, don't miss out on the biggest truth and greatest love of all time. Only in Him will you find the answers to life's important questions. Only in Him will you find eternal, abundant life.
Continue to pray that I will look to Him more than I do to the end of treatment. He is where my focus must be stayed. He is here. He has never failed. May we trust Him with childlike abandon.
Take courage! It is I. Don't be afraid. -Mark 6:50