One Year Later...

Today has been one year since Michael went from a human being to a spiritual being, the visible to the invisible, and yet his spirit and legacy is still alive to many of us. I have been touched by the many people who remembered today as the anniversary of his passing. That truly demonstrates that while he may be gone from this life that he is far from forgotten and who he was to many of us will continue on for as long as we may live on this earth.

Since his passing in 2008, life has been challenging on many levels, not only from a shattered dream of being retired partners together, but having to create a new life at the age of 50, a monumental birthday that I was sad to not have shared with him. While I feel as though I am about to paint on a new blank canvas of life while being armed with a pallet of wonderful colors of experiences and adventures that Michael and I shared, I just do not know where to place the first brush stroke. Through many months of processing the grief, I am just going to be in life again and almost let the canvas paint itself with my guidance, of course, being sure that it has balance and keeping close in my mind and in my heart the lessons and blessings that I have experienced through my many years with Michael.

Months after Michael’s passing, Conan, Chloe and I had to find a new place to call home that would allow me to eventually return to work in my usual way while allowing the “pups” to be who they are in their world – canines who need to sniff, chase squirrels and to allow nature to happen when it called for relief. Not only did we have to find a new home, but we had to find a new means of transportation to transport the two loves of my life, as well as my clients. Because Michael’s hours were flexible, he was always able to devote a portion of his day to their exercise and well being, something I found challenging early on after his passing, but what has now become part of my daily routine. It was amazing to observe Conan and Chloe going through their process when Michael no longer returned home to play with them or to feed them. Any extra effort on my part has been more than rewarding because their unconditional love has helped me through the darkest and saddest days of my life.

When Michael created this blog it was intended to be about who he could be for others as he moved through the transplant process, but unfortunately the journey took a different turn and he soon found himself planning the final chapter of his life. While reading over his journal entries leading up to his transition, I cannot begin to tell you of the courageousness of this amazing man especially his thoughtfulness and continued unselfish giving of himself. Michael wanted to have his affairs managed before his passing because he was concerned about the grieving and sadness that his mother and I would be experiencing after his death.

Many of you shared with me over this last year your memories of Michael and how he touched, moved and inspired your lives in some very deep and personal way, in even ways Michael may not have known. While this blog was intended to journal his experience through his illness, there is nothing more that I would love to see transpire is that this become a living memorial of Michael. While it may have felt awkward to post blogs after Michael’s passing, I invite you to write something that you would like to say as if you were telling Michael personally or just something to share.

Today I was at a loss for words as to how I was going to post this message, but I was returning home from our favorite Mexican restaurant (Marix in West Hollywood) and I received a beautiful email from a former client of ours who was inspired by us throughout the years. With her permission, I am going to publish her communication to me. It reads as follows:

“Hi, Bobby,

“I know today must be a day of reflection for you. I wanted to let you know I have been thinking of you. I reread Michael’s blog just about a week ago and felt even more moved by his words. I’m keeping a blog of my own now. My husband will be undergoing a stem cell transplant for a bone marrow failure disease called Very Severe Aplastic Anemia. He’s receiving medical care at City of Hope and we will hopefully find out that they have ruled out T-Cell Lymphoma (which would be in addition to the Aplastic Anemia) within the next week or so. It started with his liver almost failing. Just as they got that under control the bone marrow started to fail.

“I have always been inspired by yours and Michael’s love and your collective outlook on humanity and living a good life. I found comfort in the peace that Michael had throughout his medical challenge.

“I hope this finds you well! Con Cariño, Barbara
“Barbara Andrade DuBransky, MSW”

That is only one of the many writings that came my way and, because of its timeliness, I thought it should be published. I cannot begin to share all that’s transpired within this last year, but the first of everything without Michael was painful. I must say that I am grateful for his family who has continued to provide me warm love throughout this time. And to Michael’s mother, who I now proudly call “Mom,” I cannot begin to imagine the depth of the pain that you have experienced this year but yet I hear you healing slowly. I know it’s a pain in your heart that will not go away too soon, if ever.

In the past year of 2008 and in this new year of 2009, I have started - and plan on finishing -fulfilling Michael’s wishes by returning him to the earth from some of his favorite places that he and I shared together. It is Michael's wish to be scattered from the volcano at Haleakala in Maui, from the deck of a cruiseship, or any place that was special to us - (well, that could be challenging because there were so many) - but in his honor and with his sunshine in my heart it will be done!

May this year be full of love for you and peace to everyone in the world.

Bobby

"Rock On"!

Michael passed away in our Los Angeles home on Friday, February 8, at 1:48pm. With him were his mother and sister Kathleen, our friend Doug and I. He was surrounded by love and his exit from this life was just the way he wanted it – PDQ! On all levels, he was ready to go.

I was truly never looking forward to the day that I would be logging on to Michael’s blog so that I could communicate messages to the world about this wonderful human being, but today I find myself carrying out all of Michael’s wishes. And although I may not write as creatively and beautifully as Michael has when creating this blog, I am going to give it my best shot by expressing only some of the wonderfulness that this man shared with everyone.

For Michael, the glass was always full and he lived a life of possibility with a commitment to living life like it’s never been before. When you have that kind of intention, it opens you up for a life of excitement and one full of adventure. And I must tell you that my 11 years with Michael was just that! -- exciting, adventurous, never boring and always evolving! Michael believed in learning about the world by seeing it and his passion for travel got him to many far-away places that I am fortunate to have shared with him.

Michael had this unique ability to love that came so deep from the bottom of his heart that it almost created this angelic glow when he smiled. With his beautiful blue eyes and his bright smile, it melted the hearts of many, including mine. I have been forever blessed to have been loved by him because I truly believe you only get one love that can shake you to your core or one where there is a meeting of the souls so that each can love and support one another in order to grow individually and together as a couple. Michael was an extremely generous man who would give anything just to feel love in return. Michael believed that love has the ability to conquer all.

After Michael’s last entry right before he left Pittsburgh, he wrote much about his family and I wanted to post a response to it, but time slipped away once he returned to LA. When comparing my family to Michael’s family, it’s like the Sopranos visiting Walton Farm. The Emery family, which consists of many nieces, nephews, aunts, uncles and great aunts, is one of the most loving, caring and simple families I have ever come to know. They’re intelligent, they’re witty, and they are family in the truest definition of the word. It has and always will be an honor to be in their warm presence.

Even in Michael’s last hour, he shared his great sense of humor with us once again. With his body failing and weak, we had to move him from a recliner to the bed so that we could lay him on his side in order for him to breathe easier. At that point I was afraid it would be my body that would be failing and weak, so together with Doug, Kathleen and I, we picked up the thick blanket underneath Michael and on the count of three we flung him up onto the bed. Happy that he did not have to get out of the chair and onto the bed in the traditional way, once he landed on the bed, with his arm in the air and fist clenched, he blurted out, “Rock On”!

And so to our many friends, family and readers of this site, I hope that you have found this man to be as inspirational as I have and that you’ll always remember that no matter whatever you may be presented with in your life, please remember Michael's philosophy and his final words of wisdom: Live, Love and “ROCK ON”!

"No beads for you!"

I had checked into UPMC at 6am, the IV's were in my arms and I was completely prepped for the procedure in which they would be delivering millions of tiny radioactive glass beads into my liver. Then the lab work came back indicating that my bilirubin level was too high to move forward. Just two weeks earlier it was well within the acceptable range, as were all of the other blood indicators of liver functioning, so no one was expecting to see that kind of jump. The cancer is now beginning to effect my basic liver functioning.

Alas, my friends, it appears that I have run out of acceptable medical options. My quality of my life remains high despite the news. Other than some minor side effects that come and go such as liver pain, bloating and fatigue, I am still quite able to enjoy life. And that is exactly what I am doing. Every conversation I have with members of my family is filled with love, humor, intimacy, candor and gratitude for the time we are spending together. Every word is precious. Every sentence brings us closer through shared memories and dreams. Every minute together makes me so glad that I was born into this family that is more drawn to laughing than crying, smiling than resenting, and acceptance than drama.

I leave first thing in the morning to fly back to Southern California to be with my family there: Bobby, Conan, Chloe and my friends. Just like my family in Pittsburgh, the time spent together with them lately has been very fulfilling. I am incapable of small-talk with people who are unable to speak with me on my terms, and this seems to work well for everybody. Sometimes I feel like I am glowing with a warmth that wraps around everybody near me. It feels good and there is nothing sad about it. I just wish I knew what the trick was as to how to be in touch with this feeling more often throughout our lives so that I could pass that information on to you. The simple things in life are part of the key; being present and aware of how special each person and each moment truly is.

Your Mama

The Theraspheres radiation treatment is scheduled for January 24 at UPMC. Almost the entire surface area of the right lobe of my liver is now wrapped with cancer. The smaller left lobe appears to remain unaffected. The strategy is to deliver a knock-out punch of radiation only to the right lobe and leave the healthier left lobe untouched. It is a one-shot deal; not the typical series of daily radiation stretched out over weeks that most people imagine. The irradiated glass beads are delivered to the liver through a catheter inserted in the femoral artery of my upper thigh. The procedure itself will feel no different than the chemoembolizations that I have had, except this time they are filling the arteries of my liver with radioactive beads instead of chemo drugs.

After the treatment, there will be one night in the hospital for observation. The day after my discharge I plan on returning to Los Angeles, from that point on my treatment and care will be taking place out there. In my commitment to savor every moment of every day of health, I have decided that I would rather do my savoring in the sunshine. In LA, I will be surrounded by my partner, our two dogs, and all of the friends that have been part of my life during the past 18 years that I have lived there.

My mother will be flying with me to Los Angeles to help me through the post-radiation fatigue I will be experiencing. Bobby and I live in a downtown LA loft; he has already put up a movable room divider to provide more privacy to the living room where she will be sleeping. It is a great space with lots of light, ceiling-to-floor windows, and city views, so she will not be roughing it too much...and a child needs his mother at times like these. I am certainly no different.

CT Scan results

My CT scan results from yesterday show that there has been progression of the main tumor to a size of 14x12cm from 7x5cm eight weeks ago, plus significant new growth throughout my liver. The portal vein which was partially blocked has now been completely closed off by the cancer cells.

The chemo drugs have had no effect so I will not be doing any more of that, but there is a treatment that I am considering that involves delivering millions of small, irradiated glass beads, called Theraspheres, to the blood vessels that supply the tumor. I will be going to UPMC tomorrow for a test that will map the blood vessels of my liver to determine if I am a candidate for the procedure. Since Theraspheres uses radiation instead of chemo drugs, there are few side effects other than some mild fatigue.


The crazy thing here is that I still look like the picture of health, and up until a few weeks ago I could even say that I was totally symptom-free. I have a mild, persistent twinge under my right rib cage and my energy is down just a little. My doctor continues to look at me as a medical marvel because of the lack of symptoms at this stage. So, I will just keep on doing what I am doing. The tour continues - next stop is Atlanta to visit my brother and his family. After that, I am looking forward to settling back into my life with Bobby in beautiful Southern California and seeing more of my friends.

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.