Monday, March 31, 2008

Hangin' In There (Part II)

I'm finally feeling well enough to contribute once more to our little dialogue. Did you notice the chains around those elephant ankles that Linda posted? Well, as much as the swelling is disfiguring and disabling (I kind of feel like an elongated water balloon in which you cannot get control of any part of the balloon without the rest of it slipping into the grip of gravity), the worst part of all this experience has been the constraint on my freedom, the chains limiting my sense of control.

While in the hospital, I would drive the nurses crazy by constantly (and at all hours), leaving the confinement of my room and roam the halls, pacing back and forth the length of the eight-bed special oncology unit like a caged tiger. I resented any limitation on my sense of control -- the inability to control the room temperature, the constant interruption of sleep, the limitation of choices with regard to what and when I could eat, the inability to shower, the tethering to an IV pole, and worst, the shackling to a continuous heart and BP monitor during those times when I required pressors to sustain reasonable vital signs.

As I think about it, I have concluded that I am a wimp as a patient. Many of my own patients have suffered far worse when it comes to loss of control. My sister-in-law Genelle has bravely adjusted to the theft of her personal freedoms imposed by a rampant form of multiple sclerosis. My former nurse's husband gracefully suffered the ultimate torture of the progressive loss of all mobility (and the loss of his very life) as Lou Gehrig's disease robbed him of all neuromuscular control.

Have you ever wondered, "Why is this need for control such a powerful force within me?" Clearly it is a potent and universal element of the human spirit -- "Give me liberty or give me death!" I believe it is implanted within us as created beings, made in the image of God. It is a gift of the One who made us to take control of our universe, even as our Creator remains in ultimate control (Genesis 1:28).

I am learning through this experience what a precious and fragile gift it is. When my freedom is limited in any way, my natural tendency is to resist and to rebel. But I am also learning, reluctantly, that ultimate freedom is an internal quality that does not rely so much on the ability to control my external environment as it does on the ability to control my "internal environment" -- my thought life, my moral choices, my attitudes.

When the apostle Paul said in Galations 5:1 "It was for freedom that Christ set us free", I believe it is this kind of liberation he had in mind. The kind of freedom that transcends circumstances and is only realized as I give up control to the One who loves me and has my destiny in His hands.

Learning to relax in my Redeemer,

PS -- Those of you who read the fine print may have noticed that many of my blogs have been published in the wee hours of the morning. This is mainly because of complicating conditions that tend to slow the pace of recovery after each treatment: restless leg syndrome and insomnia. Interestingly, both relate to this powerful innate urge to control. The first arises from a need to control the movement of my legs, prompting me to get out of bed and exercise that control by overcoming the otherwise random restlessness of the lower leg muscles. The other is cured by the process of reliquishing all control of conscious thought -- it's called sleep, and when it comes, it is sweet! Ironically, snoring is the sound of freedom.

Friday, March 28, 2008

Hangin' In There

It is Friday, March 28, 2008. Dan is in the hospital at UVA waiting for dose #11 of this round of Interluken 2. (Last round he only tolerated 8 doses, so he is doing great this time!) He isn't feeling up to blogging at this stage of the game, so I (Linda) get to write a note to the "Fan Club".

He is doing "fine". "Fine" involves symptoms no one else would consider fine, but when you are trying to poison yourself enough to kill off cancer cells what is a little headache, fever, chills, shakes, nausea, and elephant ankles? We anticipate returning home tomorrow (Sat.). He won't undergo further treatment for several months, but will have numerous tests to show how amazingly quickly the tumors are shrinking!!!

Thanks for your continued prayer. We feel blessed indeed to have so many caring people lifting us up to the Great Healer!

Monday, March 24, 2008

By His Wounds...

Okay, I just could not let this day pass without sharing with you how awesome this Resurrection Sunday has been. Here I am, about to return to UVA for another round of treatment for what otherwise should be labeled terminal cancer, and I am feeling GREAT! The original left parotid mass is now barely palpable. I have no pain, no nausea, no shortness of breath – only hope and joy in knowing that the risen Christ has blessed me with another day to celebrate Him and the life He gives.

I was able to attend both Good Friday and Easter services at our church, then enjoy a wonderful brunch with all fifteen (and a half) of our immediate family in our home, with laughter, chaos and hugs all around. I’m still pinching myself (when I can find enough flesh to pinch!)

But, while I did not share this with family, all day long I have been haunted by a particular aspect of the Easter story – that passage in 1Peter 2:24 that says “for by His wounds you were healed.” Predicted hundreds of years earlier, Isaiah (53:5) also wrote “He was pierced through for our transgressions; He was crushed for our iniquities; the chastening for our well-being fell upon Him, and by His scourging we are healed.”

Linda and I exercised the discipline of viewing Mel Gibson’s The Passion of the Christ on Saturday night. For me the hardest segment to watch was the scourging of Jesus with the cat-of-nine-tails. Was it really that brutal? How did He endure such punishment? Why did He have to go through all of that suffering? If He had to die for my sins, why not a firing squad (okay with spears or arrows), or a hanging, or even water-boarding?? Why the p-r-o-l-o-n-g-e-d agony? And how is my healing linked to such incomprehensible torment?

I don’t pretend to have the answers, but maybe there is a hint of why in the classic passage on love in 1Cor 13:7: “[Love] bears/suffers all things… endures/perseveres all things.” Jesus’ death would have been just as efficacious to win my redemption and freedom from sin had it been by strangulation or a quick knife to the throat, but He and the Father deliberately chose a course of prolonged suffering and agony in order to demonstrate to me (and you) that He truly loves us with an inexplicable, unconditional, enduring and transforming love. Love that eclipses my paltry sufferings, yet fully capable of identifying with them. A love that prompted Him to crawl onto the cross and submit to the torment so there would be no doubt we are beloved.

There is no magic in His wounds that leads to my healing. It is His irrefutable (and irresistible) love that opens the door for me to be made whole. The resurrected Christ, having defeated death itself, invites me to respond to His love with faith that surrenders all to Him. In so doing, I am healed. I am healed!


Wednesday, March 19, 2008

In the Eye of the Storm

Do you remember the dramatic scene in The Perfect Storm when George Clooney has just navigated the Andrea Gail through horrendous waves and gale force winds to emerge into bright sunlight and calm seas, only to discover he has simply sailed into the very eye of the storm? Knowing the struggles and danger through which they have just passed, with a combination of resolve and resignation, he steers his craft once more into the inescapable fury that lies ahead.

Our situation is not unlike that of the Andrea Gail. By God’s grace, we have survived the initial treatment phase of high-dose Interleukin-2, have shaken off some residual (and extremely painful) complicating conditions that delayed recovery, and are now enjoying (both literally and figuratively) several days of calm seas, bright sunshine, renewed energy and strength. The nightly bouts of fever, sweats, and bone-wracking pain are gone. The pleurisy-like chest pains and abdominal bloating have disappeared. My appetite is back. I am sleeping better. There are even irrefutable evidences of tumor regression! We are basking in His mercy, love and power to heal. Thank you for your prayers and continued expressions of faith on our behalf.

While enjoying this period of respite from the storm, I have had time to reflect on the bigger picture. Unlike the fate of the Andrea Gail, I have confidence that God is going to carry us successfully through the next storm as well, as we enter the second week of the IL-2 treatment protocol. Looking back (way back), I can see how God has prepared me to be able to weather this, the greatest tempest I have ever faced. If you would like a glimpse into those reflections, I invite you to read the appended portion below – it is my story of faith.

I have no idea yet what He has in store for us beyond the gale, but I know the One who can calm the seas with a word. It is with a combination of resolve and expectancy that we head back to UVA on Monday, March 24. Thanks once more for being ‘on board’ with us through the voyage.

My Story of Faith
As a child, faith seemed easy. I recall a time when I faced almost certain death – I had lost my older brother Jim’s pearl-handled knife. He was sure to kill me! I prayed for help and God miraculously led me right to its location amidst the thick weeds in the alley behind our Detroit home. When, at age 7, a visiting Baptist evangelist offered an escape from hell and the consequences of sin, I wanted that. So I invited Jesus into my life as the One who could forgive me and make things right. He said it, I believed it – case closed! God became my hero, my helper – I could always count on Him.

Then I became a man. I became sophisticated. I learned life was not all that simple. I wondered if it was possible to be cool and still be a Christian, to be a real man and be a Christian. Besides, there are more ideas out there than just those embraced by Christianity. I explored competing philosophies and competing lifestyles, some of which had credible attraction. I really struggled with whether it was possible to be a Christian and not commit intellectual suicide.

I wrestled with these questions as a young man striving to become a respected and competent physician. Married with one small daughter and another on the way, I was in the middle of a rigorous three-year family practice residency at a hospital in southern California. On the one hand I was overwhelmed with the awesome responsibility of making life-and-death decisions about critically ill patients, the need to never make a mistake and to learn all that I could to become the best in my field. On the other hand, I was allured by those colleagues of mine for whom tomorrow did not seem to matter – they were at ease and pursued excitement more than commitment. I was allured enough that I learned to sail, took up scuba diving, and spent every free weekend either at the beach or hiking in the mountains. We kept a frenzied pace.

At the same time I was clobbered by a call schedule that kept me up all night every three days, and found myself increasingly frustrated by my inadequacies as a “part-time” husband and father. Attending church (when that was possible), became a ritual, if not altogether irrelevant.

Christianity was full of promise – love, joy, peace, patience, goodness, self-control. These things I was supposed to have as a believer. More so, the preacher urged that I was supposed to convince others that this was a lifestyle worth choosing. But I was miserable. I wanted to be modern, to be broad-minded, accepting and acceptable to others. I was, as the book of James describes, a double-minded man… “like a wave of the sea, driven and tossed by the wind.”

One night I lay in the upper bunk of a darkened obstetrical call room, waiting while several women moaned with the pains of labor just down the hall. I was laboring in a different way – I was wrestling with the Holy Spirit over the impotence of my professed Christian faith. Then it came to me, like a light in the darkness of that room. I was reminded of the simple key to happiness I once grasped as a child.

Colossians 2:6 reads: “As you therefore have received Christ Jesus, so walk in Him.” I received Him as a child, with the faith of a child. It was by the same child-like faith, that I would learn to enjoy the freedom of a life surrendered completely to Him. That night I got off the fence – I told the Lord I knew I did not have all the answers, but from that moment on I would place my trust in Him no matter what. It was a step in the darkness and it brought me into the light. I did not throw away my mind – I simply surrendered it. I finally began to possess that which before I had only professed.

Since that day, I have learned to rely on the steadfastness of God’s faithfulness. Whenever life’s circumstances have tested the soundness of this reckless surrender to Him, He has brought me through with an ever-increasing confidence in His love. It is with that knowledge of who He truly is, that we have entered this voyage through the eye of the storm.

Saturday, March 15, 2008

Home Again!

Well, I promised an update when my first round of treatment was complete. I am pleased to report that I tolerated 8 of the planned 9 doses of IL-2. As predicted, each subsequent dose brought with it a new experience: fever, headache, followed by bed-shaking chills and rigors, wild fluctuations in weight due to fluid retention, and ultimately chest heaviness and shortness of breath related to fluid accumulation in the lungs (which determined that I could not tolerate another dose). There were, of course, additional physiologic and chemical changes that required special adjustments and a progressive drop in blood count that has resulted in moderate fatique and weakness, but overall, Dr Grosh was surprised at how well I tolerated the regimen -- thanks to all your prayers!

The course was complicated by a pre-existing prostate condition which required an indwelling bladder catheter. This, perhaps, was the most difficult situation I faced because of how much it limited my mobility. That and the fact that a hospital is no place to get rest. Between bouts of restless legs, interruptions for vital signs, blood draws and medication administrations at all hours, I never slept more than 2 hours at a time.

We are back home now (24 pounds heavier) and looking forward to recuperating from this course, getting more rest, and preparing for the second round of IL-2 therapy. I am very encouraged by the fact that at no time did I experience the generalized pains that I had experienced prior to starting therapy, and currently have almost none of the pre-treatment chest and skeletal pains. I am so grateful for how the Lord prepared me to tolerate this course of treatment.

I am also enormously indebted to my loving wife, Linda, who was a constant companion and servant to my every need. She would read to me every evening from Gordon MacDonald's book The Resilient Life, providing inspiration to endure and persevere. She has gained in strength and perseverence herself, and I know it is a result of your prayers and loving support.

I now need to regain some strength, rid myself of the extra fluid, concentrate on improved nutrition and prepare for the second round of therapy that will begin the day after Easter. Once more, please know that your thoughts and prayers have been a palpable presence each day. We cannot thank you enough.

Praising Him,
PS -- I know some of you are wondering: The hair on my head (such as there is of it) remains in place -- just a few more are now white :-)

Tuesday, March 11, 2008

From the Hospital Room...

I have been asked to provide a brief update on the course of treatment while here at UVA Health Center. Since arriving on Monday, I underwent another series of tests to determine if it was safe to proceed with the high dose Interleukin-2 protocol. I am pleased to report that the tests were all improved and I have entered the protocol. The protocol consists of standardized doses of Interleukin-2 (a biologic agent that induces special lymphocytes to engage in a "search and destroy mission" against tumor cells, wherever they may be found), to be given via a central venous port approximately every 8 hrs. Each dose is expected to induce progressively more dramatic effects as the agent produces a cumulative effect on the immune system. Side effects include fever, chills, generalized pain and other local effects as tumors swell, internal fluid shifts, generalized fluid retention, low blood pressure, potential kidney impairment, etc.

So far I have tolerated the first two doses, with the second dose resulting in the expected generalized pain, fever and chills. Because of the height of the fever, the third dose is being post-poned by one 8-hr interval. Dr Grosh is very thorough and cautious in order to avoid causing more harm than good (which I appreciate). The treatment is expected to continue to either a total of nine doses or until the agent induces intolerable toxic side effects, whichever comes first.

Your expressions of love and concern have overwhelmed and sustained us. I will let you know when this course of treatment is complete.


Sunday, March 9, 2008

Prayer, Praise, and Pain

You know, I really don’t like personal blogs. They can tend to be narcissistic which makes me uncomfortable. But at the risk of a little narcissism, I really need to share with you some lessons I am learning as a result of recent events. I apologize if this is a bit lengthy. First let me summarize these last few days:

· Thursday, 3/6/08 – Unexpectedly, I developed a rather severe “toothache”-like pain radiating down my left arm with tingling in the middle three fingers of my left hand. A previous MRI of the cervical spine revealed the likely cause to be arthritic changes at C 6-7 resulting in nerve impingement at that level. I started home cervical traction which only brought temporary relief. That night I experienced the worst and most sustained flare up of generalized throbbing pain throughout my spine, shoulders, pelvis and hips, which reached a crescendo with each heart beat, and was forced to take extra narcotic pain medication. Combined with the pleurisy-like pain on my right side, I told Linda the only thing I need to do to avoid pain is not move, stop breathing and/or stop my beating heart!

· Friday – As a result of the higher dose of narcotics, I was nauseated all day, could not eat or drink more than sips of fluids, and had extreme weakness and fatigue. The nagging left arm pain persisted until, after an earnest prayer, it suddenly and completely disappeared! That night saw a return of the fever, but not the severe skeletal pain.

· Saturday – I cautiously increased my oral intake, vomiting just once, stopped the strong narcotic pain medication and relied mainly on Tylenol and Darvocet. I enjoyed one of the most restful, pain-free nights in recent days and now have an improved appetite with renewed strength.

Through this entire ordeal, I have been struggling to learn what greater purpose(s) the Lord may have in mind. He then reminded me of a passage I recently taught in our adult Bible study class from John 5 when Jesus asks the paralytic at the pool of Bethesda: “Do you wish to get well?” At first glance it seems like an odd question, but implied in His question is the likelihood that the man had learned the benefits of the life of a victim, and feared the consequences to him personally should he be suddenly and miraculously restored. I began to recognize some subtle traits in my own thinking… to experience complete healing from this aggressive and advanced cancer would require an abandoned faith and utter surrender to whatever He had in store for me and my family thereafter. Am I really prepared for that?

Then I struggled with why He would allow the additional aggravation of the left arm pain, unrelated to the cancer, to flare up just now. So I prayed, this time with the kind of faith that says, “I know you are able to heal and that You desire what is best for me. I thank you for the pain but trust you now to stop the pain and remove it at its source. Praise you, Lord, for your lovingkindness.” After praying this prayer, I fell asleep and awoke from my nap with absolutely no pain in my arm! Nor has it returned.

So now He asks, “Why not trust Me in the same way for complete healing of your cancer? Is anything too difficult for Me?” My answer is “Lord, my faith is in You and in Your lovingkindness, almighty power, mercy and grace. While I am ready to go home, if that is Your desire, I am also ready to stay, prepared to live the rest of my days in complete and total surrender to whatever You have in store for me and my family. Lord I ask for complete healing from this cancer and praise you for whatever path you choose to accomplish Your will. Blessed be Your Name!” Do I wish to get well? "Yes, Lord, yes, Lord, yes, yes, Lord!"

One further lesson learned in these last few days. During the height of the severe generalized bone pain, I learned the power of praise. There is a story in the Old Testament (2Chronicles 20) of king Jehoshaphat seeking God’s help when facing an enemy of overwhelming strength and numbers. God told him “The battle is not yours but God’s.” The battle was won that day as Jehoshaphat sent the choir out in front of the army singing: “Give thanks to the Lord, for His lovingkindness is everlasting!”

So while lying in bed in excruciating pain, I started singing: “I love you, Lord, and I lift my voice, to worship You. Oh my soul, rejoice. Take joy, my King, in what you hear. May it be a sweet, sweet sound, in Your ear.” At the sound of my crooning, my wife wisely offered to bring me the portable CD player with headphones :-) I spent the next hour worshipping Him to the sounds of Celtic Praise. The pain did not stop, but the associated muscle tension eased and I was at peace, knowing His palpable presence.

We now are preparing to return to Charlottesville for what we hope to be definitive treatment for the melanoma. My desire is that He will be glorified in what He is about to accomplish and that you too will know the power of prayer and praise to our loving God in the midst of your pain.

In His hands,

Tuesday, March 4, 2008

Ups & Downs

Did I mention my family also loves a good roller coaster ride?? (Well, except for Linda.) Today was like riding the Griffon at Busch Gardens. We were all prepared to start the high-dose interleukin-2 therapy when Dr Grosh announced that the repeat chest X-ray done yesterday again showed signs of possible pneumonia in the right lower lobe. He immediately ordered another CT of the chest (I just know I am going to glow in the dark soon) and when the results finally came back, the interpretation was a 50% chance that pneumonia was lurking out in that area. In addition, the fluid accumulation around the lung on that side had increased. Due to my persistent low-grade fevers and the chance of pneumonia, the IL-2 therapy was again postponed.

The plans are now to proceed with yet another procedure called a thoracentesis (draw off the fluid surrounding the right lower lobe of my lung with a needle passed into the chest cavity). This is currently scheduled for tomorrow, Wednesday, 3/5/08. Regardless of the results, I will be treated as if I do indeed have pneumonia with a broad-spectrum antibiotic and monitor my response. This means I will NOT start the IL-2 therapy for now, will instead be discharged sometime after the procedure, and return home.

Obviously, we are disappointed in the delay of the treatment that has the greatest chance of inducing some form of remission. I have every confidence in our physician and have of course been praying that the Lord would guide his judgment. As always, our trust is in our great and loving God and we receive this turn of events as a manifestation of His wisdom and watch-care over us. Please continue to pray for a clear resolution to this remaining hurdle on our journey.


Addendum (Wednesday, 3/5/08):
Just to add to the "thrill" of this ride, the thoracentesis was cancelled. When they performed an ultrasound to determine how much fluid was there, it was determined to be an insufficient volume to be able to safely tap it. Therefore, I was discharged from the hospital and we have returned home to Norfolk for the time being. I am to monitor my temperature closely as I complete the course of antibiotics, and will return to UVA next Monday 3/10/08 to have a repeat CT of the chest and (hopefully) begin the IL-2 protocol. Again, thanks for your prayers and expressions of love. We love you back.
"Some trust in chariots and some in horses, but we will trust in the name of the Lord our God" (Psalm 20:7)

Monday, March 3, 2008

Rounding the Bend

Well, not to overuse the analogy, but today was spent at UVA Health Center getting outfitted and prepared for the white water ahead. We arrived in Charlottesville last night and set Linda up in a small efficiency apartment. After a fairly comfortable night, we presented ourselves to the Melanoma Center first thing in the morning. After another thorough exam, review of all recent events and test results, Dr Grosh outlined the plans for the day: We had repeat tests (lab, EKG, Chest X-ray) and were transferred to the interventional radiology department for placement of a "dual-port catheter". This is a device inserted beneath the skin just below the clavicle with a catheter leading into the major vein that empties into the right upper chamber of the heart. This will serve as on-going access for future blood draws as well as the port through which the Interleukin-2 will be delivered. After the procedure, I was transferred to my room, a very nice spacious room with a view of the surrounding hill country.

The therapy will actually begin in the morning, Tuesday, 3/4/08. We are both doing fairly well and cannot express adequately our gratitude for the outpouring of love and prayers on our behalf. It is likely that Linda will keep you updated once we enter the "white water".

Still celebrating each day,