Friday, May 30, 2008
In fact, permit me a tangent about the staff for a minute. It seems that in the last couple of days, staff from different parts of this puzzle appear out of nowhere offering just what I need at the time. For instance, on our way into chemo yesterday, we passed Dr. Netterville's nurse, Georgette in the hallway. First of all, I don't think Georgette ever even met me personally (we had talked on the phone), but a few days ago at Netterville's office, she recognized me from a good distance and it was the same story yesterday in the hallway. They do have a picture to help them remember patients, but really who could be expected to remember someone they'd never really met from a picture they might have seen briefly? Anyway, she was so kind in her hopes that my pain subsides quickly and in offering her assistance with anything I need (even though she works in the surgery department and I am in oncology's hands for the next 9 weeks). She wouldn't have even had to speak, but she took the time not only to speak but also to show genuine concern.
Next, we went into the waiting room we thought we were supposed to be in, and one of Dr. Gilbert's nurses, Beverly, appears out of nowhere telling us where to go and that she would be down as soon as possible with my orders for chemo. She and Dr. Gilbert have been so kind and so available. On Wednesday, Dr. Gilbert wasn't even planning on seeing me. She was just going to write orders for my pre-chemo bloodwork and have that drawn, but when she ran into us in the waiting room and she could tell I thought she was going to see me, she took us to a room and answered tons of questions. Beverly, was also running to and fro that day helping with additional requests for information. Meanwhile, there was a waiting room full of people with questions for her, I'm sure.
Later, just before I was set to go into the chemotherapy treatment room - I mean, literally, they had just called my name - Patti McCarver, NP from surgery shows up to encourage me. What you must understand is that her office is nowhere close to the chemo treatment area. I know people who haven't walked that far in 10 years! I really don't even think she was sure of how to get there, but she showed up with perfect timing to add her comforting smile. Making a special trip across campus to comfort someone on day one of chemo is not the job of a head and neck surgery NP - it is Colossians 3:23 in action. Mom and Dad had not met her yet, but had heard about her kindess to me - of course, they were pleased to get a chance to talk with her. I don't know if I've mentioned this in a previous post or not, but Patti has prayed with us on two occasions, and I'm certain she has done some praying on her own time, as well. She is a God-send without question.
I can't leave out Debra, the oncology nurse that I mentioned above. She was just as impressive as everyone else by which we've been served. She was kind, patient, thorough, comforting, and knowledgeable. She will be my nurse for most of the treatments - I was very uplifted by that news.
There is more to be said about other staff members, Drs. Sinard and Netterville (the surgeons) and Dr. Cmelak (radiation oncologist), but I'll save those for future posts.
Randy also stopped by yesterday morning. I was pretty out of it while he was there, but I'm certain he and Doug discussed drive-thru strategies, which gave me some of my best entertainment of the day.
Let me get back to the details of yesterday. The actual infusion of chemo only took one hour, but the total experience was about 4 hours. I expect this to be the case for most treatment days. Each week, before receiving chemo, blood will be drawn to check various markers which indicate whether or not it is safe to receive that week's treatment. The lab results have to be reviewed by Dr. Gilbert and then I can receive treatment.
After the treatment, I felt fine regarding the chemo. I was just extremely drowsy for several hours later. Nausea and vomiting were possible side effects for later in the day, but I never experienced those. I have had some nausea this morning, but nothing major. My pain medications have been changed by oncology, and they are working much better than what I had been taking. This is extremely good news, of course, especially where my sleeping is concerned. For almost a week, I hadn't gotten a good night's rest. At times, the pain medication and fatigue where enough to get me to sleep, but I woke frequently with more intense pain than when I went to bed. Lying flat seemed like it might be making the pain a bit worse, so I had been trying to sleep in the recliner, but that wasn't a very successful strategy either. Yesterday afternoon, with the combination of extreme drowsiness from the pre-chemo infusion and more potent pain medication, I was able to sleep in the bed for about 3 hours solid - such a wonderful blessing! Then, last night, I slept a good five hours without interruption - thank you, Father!
Today, I have an appointment for a PET (positron emission tomography) scan to determine whether or not the cancer has spread to other parts of my body. That wasn't really a great concern before now, since my CT looked so good. In fact, I still think it will be negative, but due to the rapid changes over the last few weeks and my desire to have one done, Dr. Gilbert ordered one. It is scheduled for today at 3:15 pm.
The PET scan brings me to my next topic - cure rates. I'm always hesistant to talk about this, because I don't want any of you to be more upset or worried than you already are. On the other hand, I want you to understand the seriousness of the situation, because I cherish your prayers. I have been told that the cure rate is as low as 40% by Dr. Sinard and up to 80% by Dr. Gilbert. Dr. Gilbert also recognizes that it could be as low as 40%, but states that the cure rate increases dramatically with this treatment method depending on the cause of the cancer. Of course, as I've said before, we will probably never have a definite cause for mine. Therefore, it is impossible to produce a definite cure rate percentage. Cure rates are based on 5 years post treatment. So, if I have no signs of recurrence 5 years from now, I will be considered totally cured. Of course, I will always be considered high risk for developing other cancers.
Make no mistake, I want you to pray for complete cure if it is God's will. We must not fret about cure rates, though. Listen to this from Job 14:1,2, & 5:
1) Man born of woman is of few days and full of trouble. 2) He springs up like a flower and withers away; like a fleeting shadow, he does not endure. 5) Man's days are determined; you have decreed the number of his months and have set limits he cannot exceed.
God has a perfect plan for my number of days - cancer or no cancer, surgery or chemoradiation, promising cure rate or not so promising cure rate. However, he also tells us to come to Him and ask for what we desire. Of course, I desire to live, so I will keep praying for healing and cherishing your prayers for the same. Even still, if God has other plans, they are best for all of us, and we have to remain strong in our trust of His intentions.
Praise Him for always making good plans!
Wednesday, May 28, 2008
Now, let me tell you about my day. As you know, I was scheduled to see the surgeon today regarding the changing appearance of my tongue and my continually increasing pain. Up to this point, the surgeons, and everyone involved really, have been adamant that surgery is my best option offering the highest cure rate and the lowest amount of potential side effects. Today, their opinions changed. After additional recent history was given and a quick exam performed, Patti McCarver, N.P. and Dr. Sinard let us know that they believe the cancer is much larger than what was originally estimated by exam and CT. Dr. Sinard believes that the cancer now extends to the middle of my tongue and probably involves the posterior base (back), as well. As a result, surgery is no longer considered first-line therapy, because it would involve taking a much larger portion of my tongue and decrease my quality of life tremendously.
It is my understanding that they do not normally see such rapid progression, but it did not leave them in shock either. It does happen. Perhaps the tumor was larger than my CT on 5/8/08 revealed or it might have just grown rapidly during the weeks since. Either way, Dr. Sinard called it relentless. He then explained that we need to change the treatment plan to begin with 9 weeks of chemotherapy. If I respond well to the chemotherapy (the tumor shrinks considerably), the theory is that additional chemotherapy with concurrent radiation would be successful. If the tumor does not shrink considerably with the initial chemotherapy, then they would have to reevaluate whether surgery or chemoradiation would be the best way to finish the treatment. I was rushed over to the cancer center where blood was drawn, and I was prepared for my first chemotherapy treatment tomorrow morning at 7:30 am.
I'm sure you wonder how I feel about all of this. Today, Becky let me read from Streams in the Desert, a devotional that one of her coworkers gave her recently. It dealt with Jacob's wrestling away of the blessing. It made the point that Jacob didn't really win the blessing by overpowering, but by clinging to - he simply would not let go, holding on until he won. The writer's assertion is that to win the victory we must "... cease our struggling ... give up our own will and throw our arms around our Father's neck in clinging faith." And, that is the answer to how I feel about all of this. I don't need to wrestle with God for a blessing. He already wants to bless me (and you). All I have to do is cling. Clinging isn't easy, but I'm ready and willing to give it my best.
You can start to ask all kinds of "what if" questions. Please don't do that. It will only make you crazy, and it won't change a thing about my health. Like I've said many times, God knew this day would come before he formed me in my mother's womb, and His grace is sufficient for every moment it and all future days contain. I will address one of those questions specifically, though. You might ask yourself, "What if they had done surgery immediately?" There is a good possibility that they still would have found a much larger tumor than expected, which would have resulted in them taking a much larger portion of my tongue than I was expecting. Can you imagine waking up to that news? Don't ask "what if" questions. In life, we only have this moment, so "what if" never gets to play - the past is gone and tomorrow has not been promised.
At this point, I won't speculate a lot about what the future holds or what I will decide if presented with various treatment options. Right now, let's just deal with right now.
There is so much more in my head and heart, but I am also exhausted. I'll try to write again tomorrow. Until then, join me in pondering and clinging.
Monday, May 26, 2008
Room for laughter, even still ...
As mentioned in an earlier post, I'm writing notes or using the computer to communicate. We've all adjusted to this pretty well, but it wasn't exactly a natural transition. When I wrote my first note to Mom, she had already started to write me back when Doug gently reminded her that she could still talk. I would have laughed at her even more than I did if I'd realized what was going on myself. Poor little Emma and Daniel. Bless our hearts.
Terrah and I stumbled upon the last few minutes of a Smurfs episode yesterday. Look! I have cancer, and I'll watch whatever I feel like! Besides, who could blame me for wanting to escape to a land where everything is Smurfy and fluffy little blue creatures sing with glee as they live in perpetual harmony? I wonder how the Smurfs would handle cancer? Naturally, everyone would smurf a hand. Papa would lead a trek to smurf out the best oncologist around. Baker would smurf up some delicious puree. Vanity would smurf a way to resurface my surgical scars. Poet would smurf up clever blog ideas. Handy would probably try to smurf me a new tongue. Right - this could go on forever, and I have digressed in the saddest of ways. My point in venturing into the mushroom village was to share my sweet sister's latest with you. When she heard that Terrah and I had been watching the Smurfs, she quickly began to reminisce about my love for the Smurfs as a young child - she recalled my stuffed Smurf and my Smurf birthday cake and would have gone on, but Terrah interrupted with the question, "Which Smurf was on the cake?" Becky's response? Wait for it ... take a deep breath ... make sure your footing is sure ... if you're diabetic, grab a Lifesaver. Her response? "Well, I'm not sure what its name was, but this one was blue." There aren't enough "bless her hearts" in all the South to cover that one. If anyone is worried about death by cancer, you can relax. Once Becky finds out this made the blog, cancer won't get a chance to kill me.
Room for joy, even still ...
" ... for the joy of the Lord is your strength." -Nehemiah 8:10
Yesterday, at church, our pastor explained this verse in a fresh way. The joy of the Lord is not something we have to worry about going to find or keeping once we find it. In this verse, joy is possessed by the Lord. Joy belongs to the Lord. So, it is His joy, the joy of the Lord, that gives us strength. And, since He never loses His joy, we never lose our strength. Amen.
Saturday, May 24, 2008
Don't ever expect a specialist to get excited. Vanderbilt wasn't the least bit impressed by this little development. They assured me that I would be fine to wait until June 10th for the surgery, but did agree to examine me again this coming Wednesday at 10am. They mentioned the possibility of doing some pre-surgery chemotherapy. I'm assuming that would be an attempt to keep it from spreading and maybe to reduce the pain, as well.
All of this is sounding really negative, so let me hurry to the point. When you wake up to find your tongue in two pieces and different colors, you want someone to make you feel special. You know in your head that you aren't special. You realize that there are tons of people, in the Nashville area alone, suffering from cancers way more painful than your own. You know that in the context of all that suffering, yours isn't premier.
You know that with your mind, but your heart can't make room for pragmatism. Your heart wants your pain and stress to be moved to the top of the list. It wants somebody to do something! Vanderbilt couldn't do a lot yesterday, and I understand that. Everyone there has been very good to me, and I trust their judgment and expertise. So, this post isn't intended as a tirade on Vandy - please don't read it that way. It is simply an expression of my real feelings yesterday - pain, frustration, and some fear. The other purpose of this post is to give thanks for the ones who did do something yesterday.
There was ...
Ty, who came in on his day off to look at my janky tongue and tell me everything would be okay.
David, who on the eve of a long anticipated and much deserved family vacation, took time away from his own patients to hear my pain.
Doug, who trashed his plans to provide his usual bodyguard and taxi service, forced me to drink an entire 32 oz. smoothie dubbed The Activator from Smoothie King, and braved the fray at Verizon to get my texting plan increased - I kind of went over last month (tongue cancer would be even more of a drag without text messaging).
Terrah, who can make me smile even when I feel like I've just been freshly paved. She brought me movies and Scrabble (America's favorite word game is appropriate in every situation), but we didn't need them. Some people can make you feel better just by pulling up a chair.
Sweet Emma, who spearheaded the campaign to puree a steak for me. People, I hope you never need to know this, but Outback is almost as good blended as it is whole.
Becky, Jeff, and Dad, who are always there and should never be left out.
Coworkers, who encouraged me even in the midst of their own trials.
Dear friends and family, who continued to check on me. (Smooth and Kit, your special messages came at the perfect time.)
And, all those who did something that I don't even know anything about. Thank you for bringing some of God's light into a really dark day.
If we spent every day in comfort, we would miss out on the balm of his "everlasting arms." -Deuteronomy 33:27
Thursday, May 22, 2008
That brings me to my decision. I have decided to go with surgery, and it has been scheduled for Tuesday, June 10th at 7:30am. It is expected to last for 10-12 hours. I was almost 100% sure that I wanted to go with surgery anyway, but this latest development seems to lend it even more support. I want this out of my body completely, and I believe the chances of that are increased with surgery. Also, while the surgery will be very hard, it will be over faster. As for my singing and speech, it could be affected with either treatment plan. Therefore, I'm going with the treatment plan that gives me a better chance for life.
With that said, I ask that you continue to pray that my speech and singing will be preserved. I have asked God for this, and I believe He will grant it to me. But, if He chooses otherwise, I trust that His plan is flawless.
Also, please pray for relief from the pain. Unfortunately, the surgery could not be moved up, and it doesn't make a lot of sense to close the wound at this point. Eating and talking are no longer mindless tasks. So, I hope you'll understand if you've made an unreturned phone call.
This is where faith has to get real. I can say God is bigger than cancer all day long, but that's just a powerless statement if I fail to trust Him when the pain is overwhelming. I must admit, this is hard, and I am weak. But, He is strong and able. Pray that I'll use His promises to shield me.
Sunday, May 18, 2008
Cancer isn't the Great Pervader, though ... it just thinks it is.
The Father spread Himself throughout all my parts - mind, body, and soul - long before He allowed cancer to attack one cell.
This is what He has promised:
"My grace is sufficient for you, for my power is made perfect in weakness." -2 Corinthians 12:9
And, my response must be:
"Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." -2 Corinthians 12:9-10
How comforting it is to know that the power of Christ is greater than the power of cancer ... and greater than the power of what you're facing, as well.
Prayer requests: Continue to pray for my friend Bryan. Check out his webpage on my favorite links to learn more. Also, today I learned that a very dear friend's (Maela Tanigawa) brother is fighting for his life, as well. His name is Jonathan, and he has been hospitalized for 7 weeks battling severe pancreatitis with some very serious complications. Please pray for Jonathan, Maela, and the entire family. Thank you.
Saturday, May 17, 2008
At this point, I am almost 100% sure that I will choose surgery. Additionally, I probably won't make the trip to Chicago. I don't expect to hear anything new, and they might even recommend surgery there, as well, since my tumor is considered small. Of course, I am concerned with how surgery will affect my speech and singing, but chemotherapy and radiation could affect it, as well. Surgery seems to offer a better chance for cure and less anxiety over whether or not the cancer has been eradicated. Plus, it might not even affect my speech and singing to a degree noticeable by others (I know God can accomplish this if He so desires).
Please continue to pray for me as I make this decision. I am confident God has orchestrated this all for His and my good, and I know He is leading me. Thank you for your prayers and support.
"Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge." -Psalm 62:5-8
As it turns out, laughter really is good medicine. You see, cancer can make you mad, lonely and confused. It can make you sad, apathetic, and frustrated. It can make you cry - even if you're not much on crying. So, sometimes, you just have to laugh at cancer. Laughter may not kill the cancer cells, but it makes living with their presence a whole lot easier.
Here are some things that are making me laugh these days ...
1) You can't take some people anywhere. I'm not one to name names - Doug and Terrah. Oops! Recently, we were at my consultation with the radiation oncologist. We were sitting in the waiting room when I commented that if my enlarged lymph node was negative, I wouldn't even have to have radiation. At that moment, my sweet little brother blurted out, "I hope they do a little "Zap-Zap" on you anyway!" Of course, I knew he meant radiation would bring more assurance that all the cancer is gone, but had he really just said "Zap-Zap" in a radiation therapy waiting room? After suppressing my laughter, I had to remind him that he was born without an inside voice.
It wouldn't be fair to leave out Terrah, would it? I made the comment that if you looked around the waiting room, it was easy to separate patients from supporters - not due to side effects, but something in the eyes. Then, Terrah, never short on self-deprecating humor and still unsure of her recent haircut (which actually looks really good), declared that those looking our way would whisper, "It's the one with the wig." We had a good laugh.
2. Super-sensitive friends. I was explaining to Brad that if I chose chemotherapy and radiation alone, I would likely have to have a feeding tube placed for the duration of the treatment since I'm so thin. Even with surgery, I'm likely to lose some weight. So, I was telling him how I had been trying to eat everything in sight. That's when he asked, "Should I start taking wagers on how much weight you'll lose?" Another really good laugh. I love my super-sensitive friends.
3. Messin' with Momma. If you know my Mom, you know that she loves to do nice things for people even under normal circumstances. Well, cancer has thrown her into high gear. She's as sweet as they come, but I can't help messing with her. So, when she baked me a fresh blueberry cobbler, I said, "You just made this because I have cancer, right?" Because she does something special almost every day, I get to use that one a lot. She just gives me that "Son, I didn't teach you to act like that" look and we both laugh. It's fun to use on my sister, too. She's a little scarier than Mom, though, so I have to make sure there's a safe distance between us. The look she gives usually says, "Cancer will be the least of your worries when I'm finished with you!" And, we laugh.
4. My Entourage. David joined the usual suspects, Terrah and Doug, at yesterday's consultation. That poor little oncologist hoped she was in the wrong place when she walked in the room to find the Three Stooges of Academia lined up against the wall. They have like 16 degrees between them. I must say, cancer is a lot less scary when you are accompanied by Nashville's favorite internist, Vanderbilt's latest PhD, and your own personal big country sasquatch bodyguard brother (who has the brains to match his brawn). I told the doctor that I'd always wanted an entourage, but I didn't think I'd have to have cancer to get one! Another good laugh. I wonder what they'd charge to keep following me around after the cancer's gone?
Many other things are making me laugh. I'm sure I'll share more of them later. Laughter can be an unconcsious defense mechanism, but it can also be a conscious choice in the face of challenges which seem to leave no room for humor. I think there's always room - even if it's just a little crack.
Indeed, there will be days when laughter is less and pain and crying are more, but today is a day for laughter. Go find something to laugh about.
"Blessed are you who weep now, for you will laugh." -Luke 6:21
Wednesday, May 14, 2008
Somehow, though God repeatedly rescues them in exceptionally miraculous ways, they go on stumbling around in oblivion. I mean, wouldn't you expect that if you'd escaped 400 years of captivity through a parted sea you'd remember it for a few days? Me too! But, not these people. They get out in that desert and what do they do? Forget that a sea was parted in their honor and start crying about food. They go so far as to declare they would've rather died stuffed full of meat in Egypt than hungry in the desert. You'd think at this point that God would just turn the desert into a sea and drown them all. Instead, he shows mercy and rains down food from Heaven. You think surely they'll realize now that God always provides. Then, you turn the page, and they're wailing about how their kids and cattle would prefer all you can drink in Egypt over death by thirst in the desert. You find yourself thinking, "They've done it now. He really is gonna drown 'em all!" Instead, he turns a rock into a faucet running with water perfect in every way. At last, you think this is the miracle that will make it impossible for them to forget God's power to save. Not so much. They forget again and again and again, and the cycle just continues. And, Almighty God, rather than giving up on them, repays their faithlessness with mercy and grace.
They just make you wanna scream, don't they? Then, suddenly you get it. You're exactly like them. We're exactly like them, aren't we? Trials come ... we forget God's power ... He delivers anyway. Next trial ... our memory fails us again ... God still shows up. Truth is, we have no business defaming the Israelites when we suffer from spiritual amnesia ourselves. Sometimes, it's easy to get so overwhelmed by the details that we forget how many times God has saved us from them.
In my case, He's bigger than cancer, bigger than surgery, bigger than radiation, bigger than feared speech problems, bigger than a feared inability to sing, bigger than feeding tubes, bigger than tracheostomies ... bigger than it all. He's not just bigger than my details, though. He's so big that He can be bigger than all of our details at the same time. The details of your life are no match for Him either.
"The Lord will fight for you; you need only to be still." -Exodus 14:14
Next appointment: Friday at 2pm with Dr. Lisa Gilbert, a general oncologist. I haven't decided on a treatment course yet. This will be my last specialist meeting at Vanderbilt. After this appointment, I will decide whether or not I am going to pursue the University of Chicago option further or cancel that appointment and schedule surgery here. Thanks for joining me in praying for healing, God's guidance, and God's glorification through it all.
Monday, May 12, 2008
The tumor board met this morning and, as expected, recommended surgery as first line therapy. For oral cancers like mine where it is presumed that swallowing and speech function can be preserved, surgery is usually chosen over chemoradiation because cure rates are higher and to avoid the long term effects of the latter option. While my swallowing and speech will likely be impacted to some extent, it is not expected to be at the possible life-changing degree of chemoradiation. Of course, my speech could be drastically altered, but there is a lot of hope that it will not be. On the other hand, if I choose the chemoradation route, I will almost certainly have excessive dry mouth for the rest of my life. Most importanly to the board, though, is that there is more data supporting surgery than chemoradiation in cases like mine.
I met with a radiation oncologist, Dr. Cmelak, who reiterated the board's opinion. He, like all the others, indicated that he would choose surgery if he were sitting in my chair. He did encourage me to speak with the folks at the University of Chicago if I so desired before making my final decision. He ensured me that they are the best at treating with chemoradiation first line, and they would indeed have an ongoing study that meets my needs. However, he stated that he would want to know that the cancer had been cut away cleanly if it were him. Surgery makes that more possible than chemoradiation - of course, neither one is 100%. Dr. Cmelak and his resident, Dr. Yang, were both wonderful as all the others have been.
Some great news: My CT from Friday revealed that the tumor is no larger than originally expected, there is no bone/jaw involvement, and there is only one suspicious lymph node. (Thank God for such great news!) While the board believes this node to be cancerous, they cannot say definitively until it has been removed and viewed microscopically. Keep praying about this. If the node is clear, I might not have to have any radiation therapy post surgery (if I choose that route). If cancerous, I would definitely have radiation about 3-6 weeks post surgery (however, it would be at a much lower dose than in the chemoradiation alone option and only involve my neck).
I have an appointment with a general oncologist on Friday at 2pm. My appointment at the University of Chicago is on May 27th (if I choose to keep it). Ideally, I need to make a decision as soon as possible. If surgery is chosen, they would like to schedule it right away. Please join me in asking God to guide my decision-making process.
One final note: No Rock 'n Roll Marathon this year - Dr. Netterville says it would just be too hard on the body right before surgery - no big surprise there. Brad was really excited that he could slack on his training and starting eating big troughs, I mean bowls, of ice cream every night. I guess we'll just have to run it next year. :)
One of my aunts reminded me today that God truly is my physician - we musn't forget that.
"He delivered me from all my fears." -Psalm 34:4
Sunday, May 11, 2008
But, if I truly believe Him, I can't wallow in fear of the unknown. All of my unknowns have been known by Him since long before I was even born. He has not been caught off guard. He is ready, and He is more than able. A friend shared this verse earlier today: "Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go." -Joshua 1:9
Indeed, He is ... and forevermore will be.
Saturday, May 10, 2008
It wasn't long after the appointment that positive thoughts began to compete for space with the negative ones.
1. Terrah's graduation was yesterday - she is now officially, Dr. Terrah Foster. Very proud.
2. I have health insurance!
3. I am surrounded by people who truly love me every day of my life.
4. I have internet access (just kidding - kind of. I mean, what if we had to go back to pre-internet days! That's not funny.)
5. No one on earth can understand exactly how I feel, but I have a Father who can. There's a great Issac's song that says, "When I don't understand, I have a Father who can."
There are also thoughts of those whose suffering is far greater than my own.
1. Somewhere today there is a young man about my age who has been given news similar to mine, but he doesn't have health insurance. Imagine the increased stress!
2. That same young man doesn't have family members who would gladly take his place or friends who sacrifice their own feelings in the hopes of comforting him.
3. There are those who live in fear every day in Darfur, Afhganistan, Iraq and so many other places.
4. There are precious children sold into slavery every day.
5. Senseless disease and starvation still dominate an enormous amount of lives.
Somehow, the positive and the negative coexist in the same story. We can't understand the negative parts of the story, but we have a Father who can. Corrie Ten Boom tells the story of when she was about 8-years-old, and she asked her father about the meaning of 'sex.' She had seen the word on a sign or something. Casper Ten Boom answered, "Some knowledge is too heavy for children. When you are older and stronger you can bear it. For now you must trust me to carry it for you."
I will have to trust the Father to carry this for me.
You will have to trust Him with the load that is too heavy for you.
"Our God will fight for us." -Nehemiah 4:20
All that sounds great, doesn't it? They can get all the cancer, and I can live! I should be excited, right? It's just that it's hard to be excited about living when I've never really thought this would kill me. The surgeons are so focused on preserving life that what must be suffered by the patient and the resulting quality of life is not really on their radar. The surgery would take 10-12 hours. I would be in the hospital for several days with a tracheostomy (air supply via tube inserted into the trachea via the neck), because breathing would be compromised for a few days by swelling. I would have a nasogastric feeding tube for a couple of weeks, because swallowing would be impaired and have to be relearned to some extent. Dr. Sinard says it would never feel the same, but I would adapt to the new sensation. Again, my speech and singing might be affected and might not - they just can't say for sure. Right now, it looks as if the tip of my tongue, which controls articulation, is not affected. However, if it does have cancer cells once in surgery, they would have to excise it as well. They estimate that I would be out of work for about a month. And, to top it all off, my tongue would be hairy (what?!), because it's a transplant from the forearm. Terrah said, "No problem, we'll just get that lasered at Elan." :) Laser or not, that's downright mangy.
So, you see, I was never really scared of dying from this, but tracheostomy, feeding tube, and hairy tongue - that's scary, because it's all imminent if I choose surgery. Death is just out there somewhere, but is doesn't cause much fear in the present. It's exactly the opposite for the surgeons. They see possible death and immediately think: Cut cancer out and save young man's life. That's their job. So, to them, feeding tubes aren't a big deal - they're just part of the process, and if you want to live, you just have to get over it. Don't get me wrong, they've been very compassionate, but I can just see the cogs of logic turning in their heads. Finally, if the dissected nodes are positive for cancer cells, I will have radiation, as well. If not, once the surgery is over and I have recovered, I can go on with my new life.
Chemotherapy and radiation without surgery are still an option. These surgeons do not recommend it, because there simply aren't enough people using it as first-line treatment (in cases like mine) to give me a good idea of my life expectancy. The absolute cure rate five years post surgery is about 65%. I do have an appointment at the University of Chicago where they are using chemo and RT as first-line. I'm not sure they would do it in my case, though. That appointment is on May 27th, so I'm not sure I want to wait that long. I am going to ask my surgeons to have a conversation with the physician there about my case and see if there is really a need to make that trip.
-Tumor board meets on Monday to review my CT and discuss my case. They will call me Monday afternoon with their final recommedation.
-I have an appointment on Monday with a radiation oncologist at 10am.
-I need to decide soon on a treatment plan. Vandy is willing to do either.
Things to pray for:
-I continue to have pain in my mouth, which makes it painful to talk and eat. It is unclear if the cancer is irritating nerves or there was nerve agitation in the previous surgery. It didn't hurt when I first got my news, because I was still on prednisone. My mouth used to hurt only when food contacted the lesion - now, it is more constant. It is unclear if this will resolve with surgery or continue. So, obviously, there is stress now talking all day at my job and eating, as well as contemplating whether this pain will persist post surgery (if I choose surgery) while there are many other discomorts.
-That God will guide my decision-making over the next few days and weeks.
Daniel prays a passionate prayer in chapter 9. My favorite part is in verse 18 when he says, "We do not make requests of you because we are righteous, but because of your great mercy."
Indeed, He is merciful. I have not forgotten that.
See Bad Day, Part Two - the story doesn't end here.
Friday, May 9, 2008
Thursday, May 8, 2008
Unfortunately, I can't offer a complete picture of what lies ahead. Much is yet to be decided. Here are the highlights, though. Dr. Netterville's first impression is that surgery is the best option in my case (I won't go into the reasons for this now, but bottom line is that he thinks it would improve my long-term survival rate). He made the comment that if he were going to have cancer anywhere on his tongue, he would pick the spot where mine is located. I am fortunate that the cancer doesn't involve the back or tip of my tongue, in which case a resection would cause more problems with swallowing and speech. He does anticipate having to take a fairly large section, but does not anticipate causing a severe speech impediment. When asked how it would affect my singing, he simply said he didn't know. If surgery is chosen, I will also have a sentinel lymph node dissection, in which the node/s where the cancer is most likely to travel to first would be removed. If the node/s are positive for cancer, I will have to have radiation. If there is no nodal spread, I will not have to have radiation.
However, Dr. Netterville was quick to point out that he will be presenting my case to the tumor board (a group of oncologists, surgeons, etc.) on Monday, and they will collectively decide what is the most appropriate treatment plan to ensure eradication of the cancer. He stated that if they believe chemotherapy and radiation are the best options, he would defer to their decision. If chemotherapy and radiation are chosen, there will be no surgery involved. I will have a CT scan of my head and neck tomorrow at 1pm to help them determine the best plan for me.
Since I found out that some oral cancers are treated without surgery, I have been hoping my case would qualify for that option. I know it seems strange to want chemotherapy and radiation, but surgery has seemed to be the more overwhelming route to me. Since a fairly large portion of tongue would be resected, I would have to have reconstruction using a skin flap from my forearm. When I think about the recovery time involved, I am very apprehensive. Dr. Netterville seems to think that surgical recovery is less difficult than the effects of chemo and radiation, though.
More daunting than the recovery process is the possibility that my singing might not ever be the same. Of course, to the doctors and probably most of you, it seems trivial to consider singing a higher priority than living. And, I don't really, but I must admit there have been moments where I've wondered if I would want to live if I couldn't sing. That must sound so dramatic and just downright stupid to some of you. But, I've thought it more than once.
Also concerning is my speech. Although Netterville assures me that I would still be able to practice, I wonder what the true impact would be. Many of my patients have a hard time hearing anyway. Hearing loss in patient + speech impediment in provider = very long work days. :)
It's funny how we refer to God as the Great Physician all the time, but the meaning can't seem to permeate our dullness. Terrah and Doug went with me today. After the appointment, Terrah and I were discussing my concerns about surgery when she reminded me that Netterville said he prays for wisdom with each patient. She said she realized that if he is praying for wisdom, God is my doctor. And, if He is my doctor and I require surgery, He will restore my speech, singing and work abilities to the state He desires. That may not look like it looks now, but His plans will not be thwarted (Job 42:2), and they are always good plans. Back to Great Physician ... I use that phrase all the time, but it didn't really come to life for me until Terrah said, "God is your doctor." That struck me with such fresh meaning. God is my doctor! God is my doctor! God is my doctor!
Thank you all so much for praying and please keep doing so. Next week will be really busy as I will likely meet with a couple of oncologists after the tumor board has discussed my case. Then, I imagine decisions will need to be made quickly. Pray for wisdom, pray for my voice, pray for my pain with eating, but most of all ... pray that in the midst of this I will live my life in a manner worthy of the Gospel of Christ and that He will be glorified as He deserves.
"Praise and glory and wisdom and thanks and honor and power and strength be to our God for ever and ever. Amen!" -Revelation 7:12
Wednesday, May 7, 2008
Those jeans are awesome!
This video game is so totally awesome!
Your hair looks awesome today!
Can someone really have awe-inspiring hair? Are jeans really powerful enough to make us gaze in wonder? We've ruined what was once a really good word. Perhaps if 'awesome' were reserved for describing God only, it would get its dignity back.
Have you thought about how awesome God is lately? He is constantly doing awe-inspiring things when we need them most. I almost went to bed tonight without reading my devotion for today. I've been using Grace For The Moment Volume II by Max Lucado. This is an excerpt from today's entry:
No one breathed life into Yahweh. No one sired him. No one gave birth to him. No one caused him. No act brought him forth. And since no act brought him forth, no act can take him out. Does he fear an earthquake? Does he tremble at a tornado? Hardly. Yahweh sleeps through storms and calms the winds with a word. Cancer does not trouble him, and cemeteries do not disturb him. He was here before they came. He'll be here after they are gone. He is uncaused.
Our awesome God knew exactly what I needed to hear tonight. I'm so glad cancer does not trouble Him. Whatever you're facing doesn't trouble him either.
"Because of the Lord's great love we are not consumed, for his compassions never fail." -Lamentations 3:22
Make no mistake - I can't wait till I can devour a pizza again, but in the meantime, I'll have to take comfort in knowing ... "Man shall not live by bread alone, but by every word that proceedeth out of the mouth of God." -Matthew 4:4
And, when I can devour a pizza, I hope I remember to do it with an extra large slice of gratitude.
Tuesday, May 6, 2008
Number 1: Cancer doesn't care how much you exercise. It doesn't care how many marathons you've run, how many times per week you go to the gym, that you can swim a mile without stopping or that you've climbed a 14,000 foot mountain. Cancer isn't impressed by your fitness level.
Number 2: Cancer doesn't care if you shop at Wild Oats or Trader Joes. It isn't frightened by your Kashi cereal. It isn't disheartened by your Naked Food Juice. It doesn't back down when you wield your organic sword and proclaim loyalty to clean eating. Cancer isn't impressed by your grocery cart.
Bottom line: Cancer doesn't care about me and cancer isn't impressed by me.
After realizing this, your first thought is ... if none of this stuff helps, what's the point? A few days after my diagnosis, I was eating blueberries as my dessert for lunch. Next to me, a coworker was eating a Cracker Barrel biscuit covered with cinammon apples topped off by Smucker's caramel sauce. (I'm not making this up.) I looked at that succulent pile of sludge and thought, "A lot of good these antioxidants have done me - I might as well have some sludge myself." As for exercise, you can't help but think morbid thoughts like, "Why would I spend time trying to build muscle when I'm going to start losing it all anyway when my treatment begins?"
As it turns out, I finished the blueberries and left the sludge alone. I like blueberries. I also like exercising. God tells us our body is a temple. So, as long as I am able, I should make choices befitting a temple. Guess I'll just have to be the healthiest person I know ... with cancer (for now).
Real bottom line: God does care about me (and you) and I am really impressed by Him. "Cast all your anxiety on him because he cares for you." -1 Peter 5:7
Sunday, May 4, 2008
I don't think I even blinked. I couldn't feel emotion yet. It was like my intuition that I was about to hear something really bad had made me eerily calm. He began explaining what might lie ahead for me concerning further diagnostics and treatment, but I could tell he was uncomfortable. It was obvious that he doesn't hand out cancer diagnoses every day. Isn't it funny how we often end up comforting those who are charged with comforting us? I felt so bad for him. He couldn't stop talking. To be fair, I asked plenty of questions, but he kept talking even after the questions were sufficiently answered. He wanted to be able to do more, to call it a mistake, to close up the wound neatly as surgeons do. Instead, he felt like he was opening a nasty one. I found myself trying to reassure him with, "It's okay ... someone had to do it." But, I have cancer. He can't fix that, and I can't make him feel better about it.
There is One who is able to fix it, though. "Though he slay me, yet will I trust in him." -Job 13:15