Perception vs. Reality

On Friday, August 28, we returned to Charlottesville for yet another (seventh) Gamma Knife treatment session. This time, nine brain lesions were targeted with ionizing radiation (that makes 52 lesions to date) -- all but one of these was pre-existing and had progressed in size since the last treatment session. Unfortunately, at least one of these lesions encroached upon the optic tract in the right side of the brain, causing an intermittent distortion of a small area in the left upper field of vision (similar to but more psychedelic than the image depicted above). Closing one eye neither improves nor worsens the temporarily warped image.

Although this particular session resulted in more severe side effects than ever before (headache, nausea, vomiting, dizziness, fatigue), I am happy to report that all those symptoms have nearly completely resolved in 36 hours. The intermittent distortion of an area in the left upper visual field, however, has so far persisted. Time will tell...

Meanwhile, whenever this painless "scintillating scotoma" occurs, I am forced to mentally compensate for the distorted image in order to reconstruct reality. Having had many years of experience regarding the true nature of the world around me (and the people in it), I have had little difficulty staying oriented and readily recognize familiar faces in spite of the transient distortion. (If I briefly look at you askance, please forgive me.)

Out of all the potential ill effects of this devastating cancer, I have found this single (relatively minor) dysfunction to be more troublesome than all the weakness, pain, breathlessness, or malaise I experienced when metastatic melanoma was rampant throughout my body. When I ask myself why this is so, I conclude that it is because (perceptually at least) this complication threatens my ability to recognize the world as it truly is. During these episodes of distorted vision, I am forced to call upon well-learned patterns of proportion, symmetry, and pre-recorded images to reconstruct the reality that is before me. I am so grateful that I have that well-established frame of reference.

Not everyone is so fortunate... A young child with a "lazy eye", if not corrected early, will become blind in that eye, due to the inability to reconcile the widely divergent images streaming from each orbit. And some dear people I know who have suffered devastating losses early in life's journey have had their vision of God diminished or distorted. I am thinking of a number of former patients of mine... one whose husband died leaving her with seven young children to raise alone, another who lost his sixteen year old son... both of whom continue to struggle to see God as holy, loving, and just. There are countless others who, because of a devastating event or a slow-growing despondency of spirit, have a distorted image of the God who promised "life, and life abundantly".

I have no easy answer for these my friends. I only know that when I was given clear sight, I was introduced to a God that did not spare His own Son from all the suffering and pain that we experience, in order that by trusting in Him, we might know Him as He truly is and enjoy life with Him forever. In spite of the temporary distortions of my current vision, I cling to that reality.

May you too see Him clearly,
Dr Dan

PS -- Future treatment for the residual systemic melanoma is uncertain. Dr Grosh would like to assess the effectiveness of this most recent Gamma Knife procedure before committing to another round of high-dose Interleukin-2. Many thanks for all your prayers.

The Cost of Caring

We all know what it costs to truly care about someone. You who are parents have endured sleepless nights with a sick child or a teenager staying out late. You who are lovers have suffered distress when your loved one was out of touch, injured, or ill. You whose spouse is a public servant, corporate executive, minister, counselor, serviceman, performer, or [fill-in-the-blank] dedicated professional know the compromises that must be made to accommodate his/her career.

I don't know how many of you fully appreciate the price that must be paid by a physician's spouse who must share their loved one with an often-adoring and large patient population, many of whom have related the most intimate details of their lives (and bodies) with that one who promised fidelity to "you and you only". Now I know Linda is going to be a little embarrassed by this, but I cannot exaggerate my praise for this woman who has sacrificed so much for my career and personal fulfillment.

It would take reams to tell of the intimate times interrupted by a beeping pager, the postponed dinner dates, the seasons of virtual single-parenting, the nights she endured my emotional "left-overs" after a difficult day at the office, or the months of uncertainty caused by a malpractice claim of outrageous dimensions. Why would anyone choose such a life? Although I am not sure she (nor I) fully understood the sacrifices she would have to make on the day we shared our vows, I am so glad she did!

By the way, this past Monday, August 17, marked forty-one years since we shared those vows... and I became a very rich man :-)

As part of her anniversary gift, I offered her something I have never been able to give her before -- the gift of privacy. I offered to close out this very public venue in which we have shared our thoughts, triumphs and struggles in the face this life-threatening condition, and to spend this season (however long it may be) focused on one another, on family, and on our most intimate friends.

With words of encouragement, she turned me down, citing the potential benefit to those of you who share similar struggles and have yet to find answers in religion, philosophy, or contemplation alone. It is in that spirit, and in honor of the love of my life, by God's grace, as long as I am able, I commit to continue to share these thoughts.

Oh please don't think this is a sacrifice for me -- it's really quite selfish on my part, as fulfilling as having this creative outlet has been. My point is to honor the love of my life (and our daughters), whose sacrifices for me have been beyond all reason. And to honor the One whose ultimate sacrifice for us all has made this struggle a great joy! He is the One "who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. " (Hebrews 12:2)

I am inspired both by my wife and by the One who gave her to me, for their love and sacrifice on my behalf. At the risk of sounding maudlin, I truly desire that my life may honor their devotion... and that you, too, will know such love.

Counting the Cost,
Dr Dan

PS -- We just learned that Drs Sheehan and Grosh have decided to proceed with yet another gamma knife procedure for the brain metastases (scheduled for August 28), followed sometime later by a repeat regimen of high-dose Interleukin-2. Stay tuned...

Physician, Heal Yourself!

This entry is one of the more difficult ones to write. (No, it is not about the debate over healthcare reform.) For those of you who have been following these writings for over a year now, I am compelled to share a sobering lesson. With each journal entry I have sought to relate some element of truth that our experience has brought to light or perhaps was made more powerful through its practical application in this difficult situation. Each entry has also proved to be a therapeutic outlet for me as it has challenged this left-brained physician to exercise those more creative faculties traditionally thought to reside in the right cerebral hemisphere.

Now after six gamma knife procedures, targeting 43 metastatic deposits in the brain, I am facing the reality that recent studies indicate the persistence (and active enlargement) of at least four of these malignant growths. In addition several new metastases are evident elsewhere in the body in spite of four toxic multi-dose courses of Interleukin-2. We are currently awaiting the collaborative recommendation of my oncologist and neurosurgeon at UVA. The treatment options are extremely limited.

Although I am currently having remarkably few symptoms, I am forced to recognize the very real potential that, with or without further intervention, my faculties may (soon) progressively decline. In the past, as I have witnessed this same phenomenon in my patients (either due to malignancy or other degenerative process), I have been moved to console the family and help them compensate for their loved one's deteriorating mental capacities.

Now threatened with the same potential decrepitude, I am prompted, while I still may, to share with you what many may deem obvious: Worship the Giver and not the gift!

My sincere desire, in offering these biographical musings over the past 18+ months, has been to share some of the lessons learned along this difficult journey with cancer. Your comments, prayers, and heart-felt support have bolstered both me and my family as we have travelled this road together. I also recognize that the very challenge of sharing these thoughts in some creative and constructive way has been a source of great personal satisfaction... and potential pride.

The threat of losing those faculties that have made this creative outlet possible is perhaps the most difficult to face. But as I ponder why this is so, I am forced to recognize that I have subtly arrived at the place where I have worshipped the gift above the Giver. It is far more healthy to hold all such gifts with an open hand. (This is a hard pill to swallow.)

Even as Jesus was consoling Peter who had failed miserably during his greatest testing, He warned him that "when you grow old, you will stretch out your hands and someone else will gird you, and bring you where you do not wish to go." (John 21:18) Jesus' love for Peter had not diminished and his future was never more secure. But that streak of independence would yet yield to complete surrender.

Regardless of what lies in our path just ahead, the good Giver has not changed... He will not stop giving all the grace we need for the journey.

Gratefully,
Ummm... Oh, yeah, thanks honey... Dr Dan

PS -- I invite you to check out Linda's latest blog. You will find her creative juices still flowing freely!

Update on My Noodle

In the PET-CT gantry I lay like a mummy
As rads pulsed in and out once more
All I could hear was a grumbling tummy
Until I awoke to my snore!

This study is aimed to inform my physician
If the brain MRI changes they see
Reflect an ongoing destructive condition
Or the remnants of dying debris.

Though the tech says the study is 'perfect'
All that means is the image is sharp.
We'll now have to wait for the verdict...
Will I play with the kids or a harp?

"Some trust in chariots and some in horses..."
Yet our future is His and not man's
So we'll await the next treatment courses
As we rest secure in His hands.

Thanks so much for your thoughts and prayers,

Dr Dan

Joy in the Journey

Fair weather or foul, the joy indeed is in the journey! Linda and I just returned from a three-week vacation to the Pacific Northwest. During the first week we caught up with life-long friends in a lakeside cottage near Eugene, Oregon. The next week we explored the Olympic National Park region and spent a day basking in the elegant beauty of Victoria, British Columbia. Finally we boarded a cruise ship in Vancouver and spent the next week exploring the southern coast of Alaska all the way to Anchorage. We even had a chance to visit my eldest brother, Dennis, during an extended layover in Denver.

We had great weather in Oregon and Washington state, but on this our first journey to Alaska we encountered back-to-back days of cold, rain, and cloudy skies. Although this was a disappointment, we were still awe-struck with the magnificence and expansiveness of our surroundings. Knowing this would probably be our only trip to this region, we made the most of each day, enjoying one another's company, feasting on great food, and imbibing the natural beauty (misty as it was) that surrounded us. We did spy whales, porpoise, sea lions, moose, and many varieties of birds.

We also encountered some very wonderful people, including Ramona Douthit, the widow of a very good friend (Howard) who lost his battle with cancer last year. Howard was (and continues to be) an inspiration to me as a man who, in spite of dreadful suffering, found joy in the journey. His steadfast love of God and unshakable devotion to his family helped him navigate tempestuous waters with inspiring courage and strength.

It appears that we, too, are headed for troubled waters once more. Within hours of returning to Norfolk, we travelled to Charlottesville for another full day of imaging studies and consultations. The news is mixed: While I have few symptoms and lab studies remain normal, there are several new lesions identified on the PET-CT (involving the neck, axillae, and left hip region) and troublesome findings on the MRI of the brain. The brain images suggest either swelling and disintegration of previously treated lesions, or possibly progression of these same metastases. The good news is that there do not appear to be any new brain lesions.

After deliberation, my consultants have recommended a dedicated PET-CT of the brain to determine if the lesions there are actively growing or resolving. Resumption of high-dose Interleukin-2 cannot go forward if these lesions are actively enlarging, so it is not yet clear what course of action will be recommended. We return to Charlottesville this Friday, August 7, for the PET-CT study.

Meanwhile, our confidence in the Master travel agent is unshaken. We don't yet know what is beyond the next bend, but have learned to expect jaw-dropping vistas of His faithfulness and love.

May you, too, know joy in the journey,
Dr. Dan

PS -- I was given the distinct privilege of speaking to our church congregation on "Facing Our Fears" this past Sunday. You can listen to the message by clicking HERE. Feel free to write me if you want a copy of the outline and/or PowerPoint presentation.