Maui

I got to relive one of my favorite travel experiences today: watching the sunrise from the summit of Mt Haleakala in Maui, a dormant volcano at an elevation of over 10,000 feet. It is impossible not to stand in awe. Start with a cold night, a pitch-black sky with more stars than you have ever seen in your life, and an unobstructed 360-degree view . The sky on the horizon starts to shimmer a pale gray color which steadily moves up and overhead east to west, snuffing out the stars along the way and leaving the sky somewhere between night and day. The sun is still not visible when the horizon becomes a flat ribbon of bright reddish light that illuminates your surroundings enough that you can suddenly see that you are at the edge of a volcanic crater, white clouds are below, nothing above you but open sky. The entire island of Maui is spread out before you in bright tropical green. Beyond that, the dark blue Pacific Ocean is massive. Finally, the first edge of the sun becomes visible – a glowing slice of orange fire. It is 92 million miles away yet you feel its gentle warmth immediately. Every bit of earth and sky around you changes color second-by-second until the sun is full. It is the most breathtaking nature scene that I have ever experienced and leaves me feeling peaceful and realizing my interconnectedness with all that is.

Besides wanting to experience that sunrise again, I came to Maui to help me shift gears in my life. I had been living in a waiting-mode for months while on the liver transplant list, not making any plans for the future because everything would grind to a halt when the call came in that a donor liver had been found. After being taken off of the transplant list, I knew that I had to shift into action because waiting to be cured by traditional medicine was no longer a realistic option – the cancer had grown too large and invasive. I had expected my doctors to guide me to healing, but suddenly I was left with the knowledge that it was not going to happen that way. A cure, if it can be found, would have to be sought out on my own. Maui seemed like a good place to start looking, and it has been. I have been waking in the mornings full of energy. I workout every day – spin, hike, yoga, then for the mind I read, write and take time to sit quietly and calm my mind. I feel strong and healthy, which definitely lends itself to optimism. So far, stage IV liver cancer has just been a great excuse to take a three week vacation in Maui. I feel full of life. If this pace keeps up, my Breathless Tour is going to keep me very busy traveling for the next year. But first, I will be returning to Los Angeles to continue my pursuit of alternative therapies -accupuncture, cancer-fighting foods, etc - and to visit friends. Regarding traditional medical treatment, my next move will be determined by the results of my CT scan scheduled for January 7.

An incidental question

There was a moment in the hospital last week, a turning point that changed everything from that instant forward. It was an incidental question that I asked my doctor, thinking that I already knew the answer but wanting to hear it in his words. We were discussing the aggressive liver tumor growth seen on my ct-scan and what its implications were. I had already done hours of detailed internet research on the topic and when I asked about my prognosis, I was referring to the course of disease. I expected to hear how the tumor would gradually impair my liver functioning as it grew larger. Then, I would hear more talk of experimental treatments and people who had beat the odds, which we had already talked about at length earlier. When I asked: “What is the prognosis?” my doctor skipped over everything in the middle and went right to the bottom line: “12 months.”

That is the first time anyone had talked about time. I had seen many survival charts and paid them little attention. I would be one of the people at the farthest point on the chart when everyone else had already fallen off. I mean, look at me! I am not sick. I know what the scans and blood tests say but obviously this cancer is not affecting me the way it does others. I am an anomaly. Which is true to a point - I am told that most patients at this point look and feel much sicker. The reality of his words is that I can still be all of that, but that the cancer growth is real, too. I have to deal with it. These were the thoughts that launched me into my philosophical meanderings in my last blog entry.

I am glad the conversation occurred. I was not paying enough attention to the possibility that I may not be one who beats the odds. I was still hedging my bets and not taking action or making decisions about what I would want the next 12 months to look like if they were my last. I look forward to beating the odds and looking back on 2008 as just a wonderful year of personal growth and travel mixed with lots of breathless moments with friends and family.

So what’s next? Bobby is flying in from Los Angeles tomorrow and will spend Thanksgiving week here with my family in Pittsburgh. Then I roll-out Breathless Tour 08. First stop Maui and my buddy Blaise, a friend from LA who moved there five years ago. While I was on the transplant list, I had to be within two hours drive of UPMC, but not anymore. I have some frequent flyer miles saved up and I’m-a-thinkin’ that it is time to use them. The week after Thanksgiving, Bobby and I will be leaving the cold behind for a few weeks to soak up some Maui sunshine. It is truly one of the most beautiful places on earth, breathless at every turn, and a very healing and inspirational setting to contemplate the heavy topics at hand.

I see this blog as a celebration of living life in the moment. That is my intention. I have no idea what shape it will take as time passes, but I promise to keep sharing. I hope that in my writing some inspiration may be found that will help someone else through a very difficult time, as the reading of other’s experiences has helped me. Although I have kept a personal journal since 1988, this is the first time I have shared my writing in any type of public forum. It feels a little awkward to me right now, but I expect the words will flow more easily and frequently as this blog becomes more a part of my life.

Follow-up that I wrote later that day:

“If you were told that you only had twelve months to live, what would you do?” I always imagined that I would have a sudden sense of urgency to see things and do things that I had been putting off. Surprisingly, that is not what I feel.

I have lived most of my adult life with the awareness that time is precious and fleeting. I attribute this to coming of age in the early days of AIDS and seeing so many friends die while they were still in their 20’s and 30's. I have traveled the world at every chance. I have pushed my body to physical extremes simply because I could…marathons, 700-mile bike rides, rock climbing, and such. I took weeklong road trips with my parents, just the three of us, and got to know them in a way that I never knew them as a child - like best friends out on an adventure. I never turned down an opportunity to spend a weekend in New York with my mother to catch a weekend of Broadway shows and then afterward go to Barrymore’s where the waiters and bartenders knew her by name - “Jo”- not Grandma.

I am relieved to find that I feel calm. The only imperative I feel is to pay more attention to the special moments that play out in life each day. It could have turned out very differently if I had waited until tomorrow to do the things that are now my favorite memories – I am referring to the tomorrow that turns into next month, next year, and then becomes regret. Live like you are dying.

Breaths and being breathless

We will know if the new treatment strategy for reducing the tumor size has been effective when I get my next CT scan in 8 weeks. What I do know now is that transplantation is no longer an option for me. With the tumor invasion of the portal liver vein, the prognosis for me remaining cancer-free post-transplant is very slim. It raises the likelihood that even if I could get a donor liver surgically implanted, I will spend the next 6-months to a year dealing with recovery and complications from the surgery, and then will probably require another liver transplant as the donor organ becomes seeded with new cancer cells again.

My personal choice, which I am making now with the new knowledge about the portal vein invasion, and input from the leading national doctors in this field, is that I will not pursue transplant surgery and I will only pursue additional chemoembolization treatment if the next CT results show significant shrinkage in tumor growth. If results are not seen, my goal will be quality of life over quantity.

These past few months I have been feeling in excellent health and state of mind, except when undergoing treatment for the liver cancer. As a result, it seems like a very natural choice to allow life to run its course. I plan on staying active, living strong and maintaining realistic optimism. I have a lot of life left to live and I choose to stay busy living, rather than stay busy dying through experimental treatments, which, at most, will give my life a few extra months of breaths.

I read a quote a few years ago before these health issues were part of my life, but it struck a chord with me and I remember it today. "Life is not measured by the amount of breaths that we take, but by the number of times we are left breathless!" I choose the joy of being breathlessly excited by life than the battle for extra breaths at any cost. These photos along the right are moments from my life that made me breathless. How many more breathless moments await me that I might miss if I am at home or in the hospital dealing with the side effects from surgery, chemo and treatments to attain those few extra breaths.

Will I still feel the same months from now if I am feeling sicker? Will I change my mind and seek out those extra breaths that western medicine may provide? I doubt it. But the human mind is constantly taking on new information, recalculating new possibilities, resassessing new outcomes, and reprioritizing the existing issues in life. That could mean that I may change...but I doubt it. This feels like me. As authentic and deep-rooted as I have ever known.

Do I feel differently about death from most people? I do not know. I only know how I feel. I want to live, but I accept that death is a natural part of life. Why should my fate, my death, be any different from any other death that has ever occured on our planet? I am just an animal with the unique gift of being able to ponder my own existence. Living on a piece of rocky debris orbiting a small star in an average galaxy, one among billions, in a universe that has existed for eons and will continue to exist for eons more when I am gone.

Why should my death be any different from the death of anything composed of random combinations of atoms and molecules that was born, thrived and then faded away only to become part of another wondrous feauture of the universe? We live in the wilderness of space. No different than the wilderness of earth. Planets, stars and galaxies will continue to be born and die. Our Mother Earth eventually be consumed by Our Sun or by some other natural cosmic event. Our Sun will also eventually die and blend into the Milky Way Galaxy. Our entire universe itself has a beginning an end and rebirth. The elements that comprise my body are part of this universe and thus part of the eternal birth, death and rebirth of the universe. Lucky me to have been part of the dance of existence for a short time and to have had the consciousness to appreciate its glory.

When did existence first exist? When will it ever end? These answers will never be known, but comtemplating them provides the mystery of life. For now, I am happy to know that I am star dust returning back to the stars. Eons from now, some being will look up and wonder about the bright lights he sees in the skies and I will be part of what he sees. What a gift life is. But we can not to hold on to it forever and there comes the time to give it back from whence it came and let it continuously evolve and create.

My third chemo-embolization

On Monday we hit the tumor which then measured 6.5cm x 5.5cm with a different chemo drug called Cisplatin. As part of a more agressive treatment plan, the medicine was delivered over a larger part of my liver. This time we treated 60% of the surface of the right lobe of my liver.

I received a large dose of steroids prior to the chemoembolization to reduce the side effects. After a few days, I will start feeling the fatigue, mental fog and physical discomfort from the chemo, but right now I just feel restless and have imsomnia.

The primary physical symptom I am having is hiccups of all things. I had them following the last two CE treatments also, and as innocuous as they sound, having hiccups non-stop day and night makes it hard to eat, talk - and as my body wants to get some rest, the hiccups make more than a few hours of sleep impossible. It is nothing I haven't dealt with before and I hope that they will pass in a few more days.

A major setback

Everything was set to go; the transplant call would come any day, followed by surgery, recovery and then my return to life as usual in six months or so. My last several CT scans indicated that the tumors were responding well to chemo and the transplant would remove the cancer completely from my body. Since the liver's function is to filter the blood, I held the mental image of replacing the oil filter on a car - take out the old one put in a new one. Done. Back on the road.

I was not ready for the results I got this week. My CT scan shows that the tumor has grown aggressively in the past 8 weeks. The direction of its growth has taken it into my liver's portal vein and caused an obstruction. The blood will seek out a new path, like a blocked stream, and has the potential of creating all sorts of undesirable side effects. The biggest problem related to the tumor invading my portal vein is that the cancer cells now have a free ride to other parts of my body. The cancer cells are no longer confined to the liver. There are a few more tests to be performed, but it is looking like transplantation is no longer an option for me.

I still have no symptoms at all. No pain, discomfort or any indication that this scene is playing out inside my body. On Monday, I will be having another chemo-embolization treatment, my third, at UPMC. This time around I will be getting a stronger chemo drug than I have had in the past and will be staying overnight in the hospital for observation. I will feel lousy for a week or two but the side effects usually don't last any longer than that.

Waiting...

I was surprised to hear people who have already had transplants say that waiting for the call was the most stressful part of the whole process. Now, I get it. Prior to being placed on the waiting list for a liver there is a lot going on - doctor's appointments, tests, treatments, research. Once on the list, the pace slows down and there is a lot of time to think. Too much time. As hard as I try to occupy my time with healthy preoccupations like exercise, reading, writing, fix-it projects around the house, etc.., my mind constantly reels back to the pending transplant surgery and all of it's implications.

The wait for me will be much shorter than for most on the list. I get "extra points" for having cancer, it is sort of a go-to-the-head-of-the-line pass. Many people on the waitlist have to wait many months or years rather than weeks, as I have been told to expect.

Focusing on the good stuff:
- The liver cancer was caught early, making a transplant possible.
- My insurance will cover most of the cost of the transplant. I would not be on the waiting list if I were not insured.
- I have a large, loving and supportive family and support network.
- My family lives in Pittsburgh, 20 minutes away from one of the premier liver transplant centers in the country - UPMC.
- I have no physical symptoms. I wake up every day feeling healthy.
- My odds of having a recovery with few complications are good because I am going into the surgery with a strong body.

The Basics

A CT scan in May revealed two tumors on my liver - one 2.3cm and another 2.0cm. The formal diagnosis is Hepatocellular Carcinoma (HCC) - primary liver cancer. Surgical removal is not an option because of existing damage to the liver. Chemo is effective at slowing tumor growth, but it is not a cure. The only cure for me is liver transplantation.

I am very fortunate that the tumors were discovered early, because once they grow larger than 5cm or spread to organs outside of the liver, transplantation is no longer an option. I have had two rounds of chemoembolization since my diagnosis and the tumors have shrunk in size to less than 2cm. While there is apparently a storm brewing inside of me, I am pleased to report that I currently have no physical symptoms at all related to the HCC - nothing. There are some temporary side effects from the chemo immediately after each treatment, but that is it. I still consider myself to be a very healthy guy and have continued to teach my spinning classes three times a week at the Downtown YMCA. My doctors say that this is the perfect time to have the transplant - while I am feeling healthy and strong.

I am officially on the UNOS liver transplant waiting list and will be having the surgery at UPMC - Presbyterian Hospital in Oakland (Pittsburgh, for all of you out-of-state folks). The phone call notifying me that a donor liver is available could come at any time. After that, there will be a whirlwind of activity and it will become difficult for me or my family to return phone calls and emails - that is where this blog will come in handy. It will continue to be updated during my surgery and recovery.