Saturday, July 19, 2008

rolling with it

*** I started to compose this post on Tuesday, the day after my checkup, but it turned into something a lot more thorough than I had expected. Rather than just post what I had typed after a day or two, I decided to work with it. As a consequence, this post is the organic production of almost daily reflection and typing. This is why I hadn't posted an update about this past Monday's appointment until now. In making this post, I've thought about a number of things. I could write more probably but I will stop for now.

Monday's diagnosis was mild chronic GVHD. This is the cause of the dark patches on my cheeks and forehead, the discoloration and change in the smoothness of my gums, and the bumps on my lower lip and penis which have all appeared just within in the past two weeks. Though a manifestation of GVHD on the genitals is uncommon, Dr. C-M said, it does happen in both men and women. My feet's achiness is really numbness and that he said is a result of the tapering of the Tacrolimus. It's neuropathy, I was told, but I had no idea that neuropathy can be associated with immunosuppressives. Chemo, yes! But with Tacrolimus, I had no clue. If I continue to reduce the Tacrolimus dosage as had been planned, he told me that it's very likely that the dark patches will cover more and more of my body and the problem will worsen. As a consequence, the dosage was bumped up to 2mL, which is where it was several months ago. The hope is that the rashes and neuropathy will be alleviated.

So, what does this mean for my trip which is less than four weeks away? Scuttled. That's right. It's no more. The appearance of GVHD, Dr. C-M explained, means that they'll need to see me more often which renders a seven week absence impossible. I was banking on the plan that called for an end to the Tacrolimus on August 4th - just 6 days before my departure for Niagara Falls - which would mean that I would be free of the burden of lugging around a liquid bottle (that needs refrigeration) around. More bothersome was worrying about how I was going to refill the prescription during such a long absence. Clearly, this scenario would have been too difficult on the road. So, the logistics rested heavily on the status of the Tacrolimus by the time of my departure. I bet that as long as I was off the immunosuppressive by the 6th and was feeling well, that I'd be fine. But it didn't work out that way.

GVHD or Graft-Versus-Host Disease chose this most inopportune moment to announce "surprise!" But Dr. C-M did caution me a few months ago that as my Tacrolimus dosage continued to be reduced, it was possible that GVHD may present itself. I believe it was at my appointment in May when he told me to be on the look out for any changes in my skin's completion, most notably dark patches or what stunned me the most: white patches. "Like Michael Jackson!" he reiterated. I remember just being shocked when I heard about the possibility that my skin could change so dramatically. This is called hypopigmentation.

Before I went ahead with the allo, I was well aware of the risks posed by GVHD, which is what happens when the donor's immune cells attack the host's body because it recognizes it as foreign. Now this is exactly what the T-cells are supposed to do: find and root out those entities that don't belong. I was told repeatedly by many that GVHD itself isn't a bad thing necessarily. In fact, the whole point of the allo is to achieve what is called the Graft-Versus-Tumor or Graft-Versus-Lymphoma Effect in which the donor's T-cells recognize and destroy any rogue cancer cells remaining in my body. It is this - the Graft-Versus-Tumor Effect - that the whole allo is centered upon. A little GVHD isn't bad I've been told. It's a clear sign that my donor's cells are working. However, there's a fine line between good GVHD and bad GVHD. Too much GVHD can be very a frightening matter that is to be avoided at all costs.

I did not receive a T-cell depleted transplant in which the donor's T-cells are removed in order to avoid the possible problems associated with GVHD. But on the other hand, my new immune system has sprung back quite well. My blood counts are robust and a few months ago I began the reimmunization process. It can take longer for blood counts to recover after a T-cell depleted transplant.

So, the risk of developing GVHD has always been there. Its sudden awakening after months of slumber just came at a crappy time.

I asked my medical team if I should be worried to which they responded no. It's mild, localized and the aim of boosting the immunosuppresive dosage is to try to keep it that way. Prolonged sun exposure is troublesome for GVHD, so I'm behooved to cover myself well and minimize my time outside when it's sunny. I received two prescriptions to deal with the bumps and discoloration: Hydrocortisone cream for my penis and Dexamethasone for my gums.

This new turn of events requires me return to Sloan on Monday for a blood draw. I'm scheduled to see my doctor again in early August.

I'm surprised at how well I took the news that I'd be unable to travel. I would have thought that I would have tried to negotiate a more favorable terms of surrender, but I didn't. I just listened - listlessly and wide-eyed - and resigned to my doctor's announcement. Despite my wishes, I knew that his decision was the most prudent choice. Even before this disappointing news, I had become worried increasingly about my numb feet. "With my feet at less than 100%, how could I possibly embark on such a physically demanding trip?" I began to wonder. I needed to be ready for all the great walking and hiking that I planned to do. Who wants to go on such a marvelous trip fatigued? As many of you know, I'm not one who shies away from long, exhaustive walks or nine mile rides on my stationary bike. I love to be active and out there.

I spent part of Tuesday afternoon reviewing all the reservations that I had made and prepared to see if I could get refunds.

When I first told Eileen about my scuttled trip, I joked that Someone (or perhaps Something) doesn't want me to go. I don't believe that of course. I don't think. . . .

For the most part, I have tried always to put the best foot forwards and to be frank, I think I've been pretty damn good at it. To quote brash Denzel Washington in Training Day:

"King Kong ain't got shit on me!"

This fall will mark five years since my diagnosis and still, I haven't quite been able to shake its shadow off me. The fruitful years of my 20s, which can never be recovered, are passing right by my eyes. At times, I feel as if I've missed out on certain things. I'm tired of dealing with this cancer crap. I am tired, but I'm pushing on and some times I don't know how or why I'm doing it but I do. In moments of doubt or frustration, I have from time to time had some terrible ideas. Yet, I love life too much to entertain these flickering thoughts of darkness. If anything, the disappointment surrounding my canceled trip just reminds me of who isn't in charge but then again, are we ever?

I was looking forward very much to traveling. I had it all planned out. The maps and guide books remain piled in the corner of my bedroom. My equipment and some of my clothing are resting next to them. I was thrilled about seeing all these places for the first time: Niagara Falls and Toronto, Glacier and Olympia National Parks, Seattle's dynamic city life and Safeco Field, Vancouver and Victoria, the Oregon Coast and Crater Lake National Park. The pictures . . . I can't tell you how excited I was to photograph all these amazing places, in particular Glacier and the Washington and Oregon coasts. I also was thrilled about the idea (an idea that had been floating in my head for several months) of giving framed photographs from my travels to those, who have been so instrumental to my family and me during these past five years. I thought this would be a beautiful gesture of appreciation for all that they have done and continue to do.

For weeks, I had been immersing myself in travel guides and books imagining myself at these various locations. Memories of my visits to the Metropolitan Museum of Art and the New York Historical Society, where I have returned countless times over the past fifteen years to find an escape and solace in the majestic art of the Hudson River School artists, filled me with a great sense of awe as I prepared to travel to some of the very places where these masters found such inspirational sublimity.

As I prepared to rough it, it dawned upon me why I have looked upon the open road and these magnificent natural wonders with such yearning. A lot of it, I believe, has its roots in my innumerable visits to the city's art museums and others too, where as a teenager I became arrested by the enthralling beauty of landscape art. Though I enjoy all types of landscape art, America's most famous landscape movement - the Hudson River School - became an immediate favorite of mine and has remained so ever since. During the past 15 years, I have returned regularly to these museums to see their latest exhibitions. Though their Hudson River School galleries change rarely, except for the occasional big show, I've always tried to set aside some time to visit them when I'm in the museum. In the Metropolitan Museum of Art, for example, amongst its venerable halls of world art there remains no other part which continues to captivate me as its American Wing. It has endured as my favorite place. There, like no other part, can the stresses of the big city melt away and give way to the introspection, spaciousness, and just sheer humility that arouses after resting one's eyes on such uplifting masterpieces. The collective works of Cole, Church, and the other landscape geniuses have remained my own little refuge in this unpredictable and precarious world of ours. It's my house of worship. It's where I have I returned time and time again for resuscitation and to renew my faith in myself and in the goodness of this world.

"We need the possibility of escape as surely as we need hope; without it the life of the cities would drive all men into crime or drugs or psychoanalysis."

In his work, Church reflected his belief that the splendor of this remarkable Pale Blue Dot was imbued with the Sublime. He strove to make a semblance of God's radiance and majesty palpable on canvas. It is in nature, he believed, that we can become more intimate with God and understand the eternal bond between Him and us. And so, our relationship with the cosmos is a sacred one forged as a result of God's miraculous Creation.

The religiosity of Church's work is clear. Although I don't share his spirituality, I respect it. I do feel strongly that humanity's intimate relationship with nature is both primordial and didactic. Contemplation about the meaning and future of our existence can't be complete without thinking seriously about how our imperfect but resourceful species fits within the workings of the cosmos. The Hudson River School artists were geniuses at creating the space for such soul searching.

When I look at Niagara or Twilight in the Wilderness, for example, something powerful comes over me. For lack of a better phrase, call it a religious experience. Mesmerized, I look in awe at their august beauty comforted and inspired to face the world again.

I recall that during my autologous stem cell transplant I managed to find some sense of tranquility when I looked through the pages of my Hudson River School books in the hospital. There was a brief period during the transplant when I was unable to read a newspaper or enjoy television, but I was able to look at art. In some small way, those transcendent images rejuvenated my spirit during the toughest days.

Before I joined Barbra and a few friends to see the Met's grand new exhibition of the British master, J.M.W. Turner, on Friday evening, I spent about an hour beforehand exploring a part of the American Wing that I visit rarely. This part has the feel of an old, dimly lit attic that rarely receives visitors. It's the depository for colonial and early American furniture, wares, and portraiture mostly. However, this time I was forced make my way through its silent, narrow labyrinth-like corridors in order to reach the main part of the wing where the Churchs and Remingtons, Homers and Eakins, Hassams and Sargents rest in eternal glory. But to my disappointment, I found out that the main gallery was still closed due to renovation and as a result, just a few of these gems were on display. Some of them in fact were right there around me in the narrow corridors of all that drab seventeenth century furniture.

I had time to burn before meeting Barbra and her friends at 7:30, so I figured I'd stay down here to see what Hudson River School works I'd find. Walking leisurely through the almost empty gallery, I listened to music on my iPod which I had never done before. I saw at least two Churchs, a few Durands, a couple of Homers, and I think at least one Eakins. Oh, there were a few Remingtons and Hassams as well. I saw some other artists whose names I don't recall too. Nevertheless, as I walked slowly pass each canvas, many of which depicted breathtaking scenes reminiscent of a tourism ad, I began to well up. It hit me. I wasn't going to celebrate my one year anniversary in the heart of Glacier as I had hoped. All those triumphant looking photos that I had imagined of myself weren't going to be. I wasn't going to see the glorious Pacific coast. I don't know if it was the power of the music in combination with the beauty of the art, but whatever it was I felt the sorrow. I felt it hard.

Besides my introduction to the Hudson River School, another transformative period for me was the Watson. This amazing fellowship spoiled me with the awesome privilege of traveling to eight countries during one year at age 22. The experience was infectious. It left me with an unbridled wanderlust and an impassioned belief that through travel but more specifically, vagabonding, people can find great inner strength, hope, and connectedness with the world in which we all share.

"That is the charm of a map. It represents the other side of the horizon where everything is possible."

I was about to write that I have never felt as free, as strong, as bold, as curious, as open, and as engaged as I did during that magical year abroad, but I don't think that is completely accurate. Fresh out of college and with grant money in my pockets, I traversed each country with a remarkable degree of fluidity and eagerness to learn and be challenged. I reveled in the experience. I was on such an exploratory high. Yet, when I reflect over how I've been able to remain stimulated and hopeful during the challenges of the past five years, I think that perhaps this may be my finest hour. Indeed, during these past eleven months I've done a pretty good job at channeling some of that indomitable Watson spirit into my exploratory treks around the Harlem River and the city. Like a Watson, I heard a voice from within calling for a challenge. I listened, took that first step, and found something amazing right under my nose. Rather than being thousands of miles away in an exotic land, my restorative and eye-opening adventures were in my own backyard.

It's this insatiable curiosity that explains why I'm also so fascinated by space. I've always been like this. Like many starry-eyed children, I dreamed of becoming an astronaut one day. I've always looked up and wondered how and why. Like the distant coasts and mountains, space - a unconquerable vastness so far removed from the sterility of daily life - has for me always rested in my imagination as a place of unfettered possibility. Though unforgiving and harsh, space, like the open expanses of this remarkable but fragile little planet, offers the hope of renewal . . . of regeneration . . . of rebirth. It is where we go, despite the obstacles, to find meaning.

The heavens are so much larger than ourselves that contemplation of its infinite wonder takes us away (if only for a second) from the seemingly drab commonality of daily existence. It allows us to step outside our finite minds for a moment and to reflect upon the miracle that is life . . . whether here or elsewhere and how we as individuals and as a species share in this rich cosmic fabric. So at least, this is what I've believed it to be. It's this beautiful ideal which I know explains in part my wanderlust . . . my yearning to out there and not here. Doesn't the outside always look more pleasant than inside? Out there, the human will can't be shackled. It can't be contained. The possibilities are endless. The potential is unfathomable. It is only our inability to not imagine, to not dare, to not question, to not seek change that will stop us from going on. It is this lack of urgency . . . this satisfaction for complacency that retards our growth and perfection.

Or perhaps I've just eaten too much apple pie, listened to too many "I Have a Dream" speeches, and watched too many recordings of the Moon landing. Perhaps I'm the unfortunate sap, who has been duped by too much American "can do" retailing. Just perhaps.

I am guilty of that ancient youthful naiveté: hapless romanticism.

Perhaps I'm the sole one at fault here for being too impatient, too hopeful, too bold, too reckless. Perhaps it would have been wisest for me to have stored my dreams in mothballs. Perhaps it would have been best to have waited passively for the moment when I saw that heralded emblem in the sky, which signaled that it was time to resurrect my dreams once again. Maybe that would have been best. But such timidity isn't me. I want to be out there grabbing the reigns of life despite the precariousness of my situation.

Remember this is the same guy, who feeling that somehow he had what it took, went ahead and applied to compete in a nationally televised game show months after completing cancer treatment. This is the same guy, who after getting a splenectomy and while receiving months of chemotherapy, managed to juggle a full course load of studies and completed his master's thesis on time at one of the nation's top universities. This is the same guy, who only a few months after his second transplant, pulled himself outside and in the process stumbled upon a hobby that has opened up new opportunities in the months since then.

I'm not a quitter. I know I'm not. However, I have been forced to resign to the facts of the moment. Yes, it's too bad about the trip but most importantly, I'm alive. I'm here. I'm functioning. I'm blessed with an enormous amount of love and support from so, so many. Despite my difficulties, I'm lucky. Though bruised, I've managed to roll with it. I've managed to press on. Through all of this, I've learned that I'm an amazingly resourceful person. Too many, unfortunately, don't have the opportunity to do the same.

Late Friday afternoon as I walked to Union Square to catch to subway to go to Met, I was heavy in thought. I was thinking about the setbacks caused by my health, but then I paused and thought about the regal grace of my oldest sister, Dawn. Here I was - amidst the bustle and treasures of one of the world's great metropolises admiring the city's gorgeous women as they passed by - while my innocent, beautiful sister remained fastened to a bed as she has been since birth. Though she has never had the opportunity to experience one percent of the bounty of blessings that I have had and that life should bestow on us all, she radiates. She shines like no other I know. And what was I doing? Moping about my blessings. The sudden realization of my ungratefulness about a life that has been wonderful despite cancer made me feel petty and weak as I thought about the unconscionable suffering of my sister and the millions elsewhere who carry such unimaginable burdens. Feeling diminutive and disappointed in my own narrow-mindedness, I cried amidst the bustle of the great city.

With elegance and laughter, Dawn just rolls with it. I must roll with it too.

I'm reminded of a passage that I read in Slaughterhouse-Five recently, which seems appropriate to share here:

What the Englishman said about survival was this: "If you stop taking pride in your appearance, you will very soon die." He said that he had seen several men die in the following way: "They ceased to stand up straight, then ceased to shave or wash, then ceased to get out of bed, then ceased to talk, then died. There is this much to be said for it: it is evidently a very easy and painless way to go."

One of the memorable clips from Yankee lore that was shown during the broadcast of Tuesday's All-Star game was of the great Lou Gehrig, who in concluding his famous farewell address said:

"So I close in saying that I may have had a tough break, but I have an awful lot to live for."

Looking forward, I know I'll be alright as long as I hang on to the enthusiasm, grit, and hope that has taken me this far.


Comment Blogger Tom (dB) said...

I'm sorry to hear this Duane. But your thoughts and reflections show that you have it under control. I do believe everything happens for a reason, even though it may not always be obvious as to why. For everything we experience we learn. One day it will all become clear.

5:30 AM  
Comment Blogger Kevin said...

It's frustrating to have to take a step back after so many hard-fought steps forward. It's good that you realize that the road will be there waiting for you when you're ready and that you have much to discover closer to home.

12:21 PM  
Comment Blogger Michelle J said...

Duane, this post of yours hit home for me! I have of course not gone through any of the trails you have, nor even been close but still....lots of what you have to say i can certainly relate too. I am older than you, yet you seem so much more mature and worldly than i do. Can't explain it really, perhaps if we meet for dinner sometime i can explain it in person!

Just an all around amazing post Duane, your writing is impeccable really!! Thank you for this!!

5:35 PM  
Comment Blogger Jennifer said...


Your recent entries have really "touched" me. Even though I haven't followed you since the beginning of your journey, I have been long enough to "know" you. You are so open and honest, just as I am. The connection we share is amazing. The trials we have been through not many people can talk about from personal experience. I know those feelings you have. It is a terrible place, but at the same time we are both so thankful for what we do have, what we've had and what lies ahead. Like I've told you before, you simply amaze me Duane. I would be so honored to meet you in person. If you ever come to Maine, I ask you to please come see me! I have to say I cringed when I read GVHD. But I'm glad the docs are on top of it. Don't let it get out of control like mine did. Look at your body every single day and anything, ANYTHING that doesn't look right question it. It's better to be too careful than to ignore it. I pray for you that this is the worst of the GVH for you and it will go away. I am still on all my post transplant drugs (Nov. 2006) almost two years! Still on my favorite too, Prednisone. But if it ain't broke don't fix it right? (Well I can't speak of my lungs in that phrase.) I think of you often and know that you are a true blessing here on earth.

Love & Prayers,

6:57 PM  
Comment Anonymous Anonymous said...

Oh Duane. I'm so sorry to hear your trip has to be postponed. I know how much it means to you and how long you've been thinking about it. You'll make the trip sometime! I just know it.

~Sarah formerly up the street

9:18 PM  
Comment Blogger Duane said...

Thanks everyone for allowing me to let loose.

Clearly, there were a lot of conflicting emotions in this post. Due to time, I try to minimize what I say generally but there are moments, such as this one, when the best thing to do is to just be. To just go with how you feel and try to work with it. That's what I did here.

Thanks for listening. Thanks for being there. :)

1:58 AM  
Comment Anonymous Anonymous said...

May the God of comforts through His son, Jesus Christ make His presence known to you. May you rely on Him to guide you through this bump, and above all, May you experience the joy and peace of His love through the cross of Christ who gave Himself so that we may have eternity with Him. In the world you will have tribulation, but be of good cheer He has overcomed the world. It is with a relationship with Christ through His death and sacrifice on the cross that we come to known Him and the surpassing beauty of Him. Helen

2:56 PM  
Comment Blogger Scott said...

That sucks. I don't know why life has to knock us down all the time but it does. It's a set back and this too will pass. You will make that trip. Stay positive and make the adjustments you have to...(for now)

Hang in there.

12:12 AM  
Comment Blogger Veronica said...

Wow - what an eloquent post. It's amazing how well you cope with the crap life throws at you. I'm so sorry about your vacation being cancelled as I know how much you were looking forward to it.....and I hope that your GVHD is brought under control quickly and doesn't cause you any more trouble than it already has.
Always in our thoughts, Duane and full of awe and admiration at what an amazing human you are.......xx

7:34 AM  
Comment Blogger Kathy - Eric's Mom said...

So sorry to hear of the delay of your trip - I know you have looked forward to it for some time.

May I say thought, that your post is some of the most thought-provoking writing that I have read recently. Thank you for sharing it.


7:52 PM  
Comment Anonymous Anonymous said...


You continue to inspire me with your words. There is so much that we can all learn from your experience. I am moved by your spirit and will to LIVE. Notice that is LIVE with all capitals!

Art offers a wonderful diversion and a sort of therapy. I have taken to painting to relieve my own stresses. What a wonderful way to express emotions and bare your soul.

I pray that this recent setback is just that, a setback, rather than something more sinister. You are an amazing young man Duane. You have so much to say and I hope that you will continue to share your voice with us.

10:05 PM  
Comment Blogger One Mother with Cancer said...

I'm so sorry for this setback. Hopefully within the year you will be able to make your trip... You will be in my thoughts and prayers.


1:10 PM  

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