Stand Up To Cancer - standup2cancer.orgThis is where the end of cancer begins
   Please leave this field empty

SU2C Blog

Share this:
Email

Like this page on Facebook

Living and Loving Through Ocular Melanoma

Posted on July 25, 2012, 12:56 AM
Living and Loving Through Ocular Melanoma
Dr. Sara Selig and her husband Gregg.

By Sara Selig

I remember the day Gregg was diagnosed with a malignant tumor in his eye like it was yesterday. Two days in a row, after our morning jog, Gregg complained that when he looked at the pavement out of his right eye it appeared “wavy.”  As a fourth-year medical student at the time, I didn’t really know what this could signify, but I tried my best. “Maybe you’re drinking too much caffeine,” I suggested. “Or maybe you have an ocular migraine or a migraine aura without the headache.” I tried to convince Gregg that it wasn’t something we should be concerned about. After all, how could I allow my mind to go to a place in which the love of my life had something seriously wrong?

Luckily, Gregg realized the level of medical advice he was receiving, and made an appointment with our family ophthalmologist. Gregg came home from that Friday appointment visibly shaken and anxious. He explained to me that the ophthalmologist had seen something in his eye that he wanted a specialist to look at. It could be a “freckle,” or “mole,” but it also could be something worse.

On October 31, 2006, we met with a specialist, an ocular oncologist. He examined Gregg’s eye and then had us sit down together. He explained that Gregg had a “bump” behind his eye. I knew he meant tumor, but the second anyone said the word “tumor” to us that day, my senses completely shut off in an uncontrollable way. The way the ocular oncologist carefully used the word “bump” allowed me to stay somewhat present and hear what he had to say. Next came a range of additional tests and meetings with both a radiation oncologist and a medical oncologist—a lot in one day. Especially when it’s the first day you are receiving a diagnosis of ocular melanoma, a cancer we had never heard of before and one that typically affects people in their 50s and 60s. What were we doing here, at the ages of 29 and 34? We went through the motions, taking the tests and responding to question after question, but we felt as if we were in some awful dream. We couldn’t have known, then, the impact this day would have on our lives.

Gregg had his eye tumor treated and spent Thanksgiving 2006 with an eye patch over his eye as his eye recovered from treatment. The emotional healing took longer than the physical healing, but Gregg and I worked hard to get back into life and put the cancer “behind us,” or at least “aside of us.” Unfortunately, that became more difficult to do when we learned the devastating news, at Gregg’s one year follow-up, that the cancer had spread to his liver. There was no known cure and no treatment had been proven to extend lives. We were told Gregg had 6-9 months to live. Instead of living lives similar to our 30-something year old peers, we were being challenged to our core and were working to face life with as much perseverance and courage as possible.

Gregg felt very strongly, early on, that he did not want to be treated by a single physician, but, rather, he wanted to bring together the intellects of the best and the brightest and be cared for by a team of physicians. If no single person, institution, or discipline had the answers, then Gregg wanted to bring people together to think, collaboratively, about how to save his life. As an internal medicine resident at the time, I remember feeling uncomfortable about Gregg’s requests—I knew the medical field didn’t really work that way, and I was afraid Gregg was going to offend or alienate someone by expecting this kind of approach to his care. But, being the talented psychologist, coach, and fierce patient advocate that he was, he was able to encourage and inspire his medical team to do just that—work as a team. The exceptional physicians helping to care for Gregg accepted the challenge and became strong advocates for Gregg, all while working together as a team. Gregg had dedicated physicians from five different disciplines communicating about his care from more than six different centers around the country. A psychologist both by birth and by training, Gregg believed this kind of collaboration could not only save his life, but is the type of collaboration that will, ultimately, find a cure to ocular melanoma and save other lives as well.

We conferred with our trusted physicians and came up with a plan that made the most sense to us. Over the course of the five years we spent fighting ocular melanoma, this was the approach we relied on. We worked together as a tenacious team. Together, we would learn about the cancer’s status, through scans Gregg would get every 8-12 weeks, and then get several opinions and gather as much data as quickly as possible. We traveled all over the country to see physicians and look into clinical trials. We sought out alternative approaches and worked hard to fit everything together. We considered everything and weighed the potential risks and benefits. Then, in the absence of outcome data (the most meaningful kind data, of course, and how I have learned to make medical decisions throughout my training), we had to distill all the information and go with our “gut” feeling about what to do next. Although Gregg and I were a fierce team against ocular melanoma, we were not alone—we are very lucky to have extraordinary family, friends, and colleagues who have helped and stood by us through each decision, each new treatment, and helped us adjust to each “new normal.”


Throughout Gregg’s five years of battling ocular melanoma, he taught me, our friends and families, and our medical team a great deal about perseverance, not accepting the “status quo,” living a full life with cancer, and about advocacy. After his diagnosis, we continued to live life as fully as possible—both personally and professionally. Professionally, Gregg continued his work with the Clinton Foundation and the Elizabeth Glaser Pediatric AIDS Foundation in Kenya and Mozambique, where he was helping establish psychosocial programming for children and families affected by HIV and AIDS. Gregg’s professional work later focused on management and organizational psychology in Boston. He continued to work full time and co-founded the OPUS Leadership Group—an organizational, leadership, and management development firm with offices in Denver and Boston—while undergoing treatment. Right up until his death in January 2012, Gregg approached everything with a sense of hope and optimism that was infectious. His indomitable spirit lasts inside all of us who knew and loved him. After Gregg’s death, Brigham and Women’s Hospital in Boston—where Gregg spearheaded groundbreaking work on leadership and teamwork in medical training—established the Gregg Stracks Program for Leadership and Teamwork in Medicine. Through this, and in other ways, Gregg continues to teach and have an amazing impact on the world even though he is no longer physically with us.

Remarkably, in Gregg’s last few days, he taught lessons that will always remain with me. Before that time, I had never really believed in “soul mates” or a spirit world, per se. But, what I felt with Gregg taught me how two people’s souls can be connected in a way that transcends our earthly being. And then, the final lesson Gregg gave me while here with us—he faced his greatest fear with fortitude. Gregg’s intense focus on living life so fully over the past five years had been absolutely admirable and inspirational. However, in facing death, his actions were just as admirable and inspirational, if not more so. It became clear to me that Gregg could continue to cling to life, but that its quality was continuing to diminish each day. It became so hard for me to see him suffer. Although our fourth wedding anniversary was two days away, I knew my anniversary gift to Gregg had to be to release him, to help him let go. And, so, I did just that… I held Gregg in my arms as I lay beside him all day and then, in the afternoon, while not wanting to or believing it myself, I told Gregg that he needed to move on to his next journey. I reassured him, and myself, that he would be ok, that I would be ok, that our love is eternal, and that we will always be connected—our souls are intertwined forever. About an hour later, while I held him in my arms, Gregg took his last breaths on this earth, transitioning with a grace and dignity that will always be with me.

It has been just 6 months since that day in January that I held Gregg in my arms for the last time. I miss Gregg with all my heart and my soul aches to be with him. I grieve losing the love of my life. I grieve losing our future together. I am just beginning to learn how to live without Gregg physically by my side. I continue to learn from Gregg and work to remain open to life, love, and growth as Gregg and I have always fought to do even in the face of adversity. I am buoyed by the deep love Gregg and I share as well as the love and support of our extraordinary community of family and friends. I wish I knew in my heart that I will be OK. I don’t, yet. But I hope for it, for myself and because it is what Gregg would want of me.

Sara Selig, MD, a recent graduate of the Doris and Howard Hiatt Residency in Global Health Equity and Internal Medicine at Brigham and Women’s Hospital, is a physician in Boston, Massachusetts. Together with her husband, Gregg, and the Melanoma Research Foundation, she co-founded MRF’s CURE OM (Community United for Research and Education of Ocular Melanoma) initiative for which she is currently the Director. You can find their site at www.cureom.org


Return to Blog

Comments

Posted by Julie Harris | July 25, 2012 7:20 AM

Sara—This is such a beautiful tribute to Gregg.  With your heart torn open on your sleeve, you have managed to tell this hard story with so much grace.  Gregg was truly remarkable, wasn’t he?  And you, My lady, are courageous and quite amazing, yourself!

Posted by Kathy Noel | July 25, 2012 9:46 AM

When I met 2 year old Sara, I knew that she was a special person.  Little did I know how her strengths and that amazing smile would be tested.  Bless her and the amazing family, Andy, Ellen and Becky, that support her so powerfully.  May she continue to make meaning from Gregg’s tragic fight against this terrible disease.

Posted by Bonnie Dalzell | July 25, 2012 9:49 AM

Sara, your writing is so lucid and honest that I believe all readers will be enriched by your words. I certainly have been. Your description of Gregg’s and your intertwined souls has provided a meditation point for me; perhaps in a future blog you might say more about the way you understand the meaning of “soul”?

Posted by Peter L | July 25, 2012 10:44 AM

Well don, Sara! And thans from another OM patient.

Posted by Kimberly Koshiyama | July 25, 2012 3:37 PM

I am so, deeply sorry to hear about the loss of your husband.  I just recently lost my mother to stage 4 metastatic breast cancer last week and the pain is unbearable, I cannot imagine losing my boyfriend (I am in my mid-20s).  I am sending prayers, love and positive thoughts to you.

Posted by lisa buckingham | July 25, 2012 3:37 PM

i am so sorry for your loss, i to had to do that with my dad in january 2012, your story sounded so familiar, so now my partner mark of 14 years is also dealing with cancer,he to is the love of my life,thank you for sharing your most private moments with us,lisa

Posted by Joe Caridi | July 25, 2012 3:46 PM

Hi Sara, Thanks for writing this.  I lost my wife to lung cancer on 2/2 this year.  Your words in the last paragraph are encouraging and comforting to me.  We are at similar stages of grief, it seems. My wife, Dianne, died at 42, and took a very similar approach to the fight as Gregg.  Unfortunately, Dianne and I never really said good-bye, since that would have made the inevitable just too real.  We have two young children and Dianne’s only goal was to live to see them one more day.  I think we will have a connection forever as well.  I can’t imagine not thinking about her at least 20 times a day.  Again, thank you for writing this.

Joe

Posted by sally | July 25, 2012 3:49 PM

Words fail me but I just want to pay tribute to you all. I am fighting breast cancer and have tried to share my journey and I just hope that when I move on to the next part I can leave such inspiration and love behind me. What a wonderful love you share.xxx

Posted by adrian fleishman | July 25, 2012 4:47 PM

How common this cancer is becoming.  I have a friend 35 yeas old with two young children battling this cancer.  The outlook is grim.

Posted by Jana | July 25, 2012 4:48 PM

Sara,
I don’t know you, nor do I known how this showed up on my FB timeline, but I was moved to read your story. I know that there is so much more between the lines of your suffering. I am sitting here crying for your pain. Yes your husband was a very brave and wonderful man from what I am reading. You were brave as well. But the lonely nights and empty bed sometimes are what we need to be the bravest about facing. I truly hope that you have a strong network of friends and family close by you.
I lost my Mom 6 years ago to cancer and while it’s not the same as losing your soul-mate, the pain of losing your best friend is the same. I am trying to heal from being cast aside once again from the man that I have loved for 12 yrs. It is hard to heal sometimes.
I am working hard on being my best self. Once I start back to work in August it will be easier but for now it just hurts a lot. I will be keeping you in my thoughts and prayers Sara.
My Mom’s name was Sara as well. I miss her every single day. We built up a friendship over 35 yrs that has taken me 6 years to recover my balance from losing. The last two years have been easier but I still think about her daily.
Take care of your heart as well Sara. Peace be with you.
Namaste,
Jana

Posted by Shane | July 25, 2012 4:49 PM

It sounds like Gregg’s courage, free-thinking, and perseverance had an incredible effect on many people’s lives.  I’m sorry for your loss.  Grateful for you sharing.

Posted by kelley naftal | July 25, 2012 5:54 PM

Sara,
Thank you for sharing your story with all the world. It was very touching. Greg sounded like an incredible man. I am glad to have known him if just through this article. Cancer is so hard. It shows little mercy for those it touches. I lost my Brother Ben recently. He was only 47.  I too was right beside him when he took his last breath. It was devastating and a relief all at the same time. Devastating to lose him. Relief that his misery was over.  He suffered. For too long.  I hope you continue to get stronger with each day.  And I know you will. It takes time. I am convinced that I will be with my sweet big brother again, when my life on.earth is over.  I know you’ll see Greg again.  Much love. 
Stay strong sweet Sara.

Posted by Jennifer M Bardin | July 25, 2012 6:24 PM

Dr. Selig, your story is truly moving.  It hits me close to home because I was diagnosed with melanoma 8 weeks after the birth of my second child.  I spent the rest of my maternity leave scheduling appointments with my general and plastic surgeons and my oncologist all while trying to care for a toddler and a newborn baby.  When I left my doctors office after the results, fear and panic hit me like a ton of bricks. I sat in my car and cried for an hour.  I was pregnant when I had this! Did I spread it to my unborn baby?  All I could think about were my children, how I prayed to God my baby girl didn’t have melanoma too, and how they were going to grow up without a mother.  What will my son be like when he’s 20, and how beautiful my daughter will be when she gets married, and I thought for sure I was going to miss it all.  Thankfully I am a Radiologic Technologist at our area hospital where I was receiving my care, because I was able to have my PET scan and MRI done before my surgery that they were able to schedule within 10 days of my diagnosis.  All these people, surgeons, oncologists, nurses, my fellow technologists came together for me, took care of me in my time of need.  The day of my surgery for my wide excision with sentinel node bx came and went, and I had to go home and wait the dreaded three days for the results.  When my surgeon called me, I don’t know if it was fear, dread or anticipation that I was feeling. I burst into tears when he said all my other results were negative.  I held both my children so tight at that moment. That was three years ago. I now see my dermatologist and oncologist every 6 months.
I see things in a different light now, for my patients and everyone around me. It was a wake up call for me, even now, everyone can see my scar, but it has faded in my eyes.  I am now divorced and living on my own, I feel empowered and I don’t take life for granted.  Although “cured” is not in my vocabulary, I try not to be scared all the time,  work hard, love my children, and just…. live.
thank you for sharing your story

Posted by cathryn johnson | July 25, 2012 6:53 PM

i feel for u with every being in my body.  i just celebrated my 10th yr anniversary in july of 2012.  but in 2007 my husband was diagnoised with lymphoma.  we have spent half our marriage fighting this cancer.  he has went into remission twice.  it wasn’t until i was in my 30’s that i found my soul mate.  his brother tried fixing us up, and i wanted no part of it.  i fought hard to push it away.  we met in aug of 2001, were engaged by dec 2001, they married by july of 2002.  we have been together ever since.  i have been there threw surgery’s, biopsy’s, hospital stays, kemo treatments, radiation treatments, doctor appointments, as well as every aspect of his journey.  he at times has wanted to give up, to just let go.  i fight for him every day.  i feel for u in every way possible.  i don’t know how i will servive when they finaly tell us he only has so much time and the fight is over.  ur story goes to the heart and i hope i can only at least be half as strong as you have been.  everyone tells me i will be ok and i will make it threw but you as well as anyone know that only time and strength can decide what happens to our furtures.  my prayers and my heart goes out to u.

Posted by Lisa Tiplady | July 25, 2012 7:07 PM

SUCH A BEAUTIFUL STORY OF LOVE, FAITH HOPE, PERSERVERANCE, PHILANTHROPY, KINDNESS…..JUST BEAUTIFUL.THE DIRTY C WORD NEEDS TO BE ELIMINATED FROM OUR LIVES…..

Posted by Peg K | July 25, 2012 7:18 PM

Sara, your blog piece is dynamic, heart-wrenching and so honest. I can only hope Iron Mike and Gregg can continue to watch over us both.

Posted by Lesley | July 25, 2012 10:18 PM

Thankyou for telling your story . It is very moving and powerful. I too was diagnosed with ocular melanoma in 2006 and I also have developed the untreatable metastatic disease. Thanks to Gregg and Sara for signposting their path I too have been able to prolong my life. I also was a medic- a family doctor in the UK. If Sara and Gregg had not supported me then I would have died in 2010. In the UK there were major problems getting funding for health care as public money should not be wasted. By showing doctors how patients lives could be prolonged if they were treated I was able to prolong my life too. Currently I have no evidence of disease and I am able to lead an active life. This would not have been possible if Gregg and Sara had not shared their lives.
Many thanks
carpe diem

Lesley

Posted by Julia | July 25, 2012 11:04 PM

Thank you for sharing your story of such courage. My stepson was 21 on July 22 he died 2 years ago of metastisc melanoma unknown origin like you my husband did all he could and surrounded himself with the best of the best to help find the best treatment and cure . May you both be blessed with positive results!

Posted by John Green | July 26, 2012 3:12 AM

Thank you for sharing.
I too am fighting against melanoma & lymphoma, a battle that’s been raging for 2 1/2 years. I take encouragement from your husband, because I also fought against the norm & have been blessed to get my physicians to work together as a team in my treatment. I know in my heart, through God, He made me aware of this at the onset of my diagnosis. As He carries me daily, I know my all my physicians are doing their best, together for me & it means so much, just for my mental well being. I hope through your experience, that this type of “team” treatment becomes the norm rather than the exception. Thank you again for sharing with me, & in turn, I can share with my wife.

Posted by June Kirk | July 27, 2012 9:23 AM

Sara, as a long-ago friend of your parents I have to acknowledge what you have just posted. You have written this completely from your heart, and your words will reach into the hearts of every reader. The heart of this reader feels your pain, your grief, your loss, and yet also feels your tremendous strength, wisdom, spirituality and love. I believe Gregg’s gift to you, and now to all who have shared your experience, is the phenomenon described by St. Paul, as “the peace of God which passeth all understanding.”
May you continue to find that peace whenever emotions overwhelm. I am now holding you in my heart with gratitude for the amazing woman you are, with peace that is beyond understanding, and with love, because that is all there is.
June Kirk

Posted by Gail | July 27, 2012 12:04 PM

Sara,  I lost my soul mate, best friend, lover and the love of my life to melanoma almost 3 years ago.  We were together for 34 years.  I too struggled with the task of going on after Bob passed from that horrible disease.  Each day I get stronger but not a day goes by that I don’t cry for him.  The lose is too deep, even now, for me to escape from.  I try to make each day count, and honor Bob’s memory…he too was a very brave man in his battle with the monster called melanoma.  I am hopeful that they will find a cure, if not in my life time but in yours.  You are a very brave woman.  It took a lot of courage for you to tell your story.

Posted by Leah | July 27, 2012 6:41 PM

Thank you for writing this blog! I am glad that you and Gregg didn’t feel alone when dealing with this, I know I had my husband’s support when I was dealing with plain ol’ Melanoma, but I felt SO alone! I really wish there were more support groups for rarer types of cancer.
I think you gave your husband the best anniversary gift you could have given him by allowing him to go when he was obviously suffering so much, even if you weren’t truly ready for it. It was what you had to do! He loves you for that and eventually you will get better! Ok, now think of one of your most favorite moments with him and smile…don’t be sad! He’s in a better place and you did everything you could! smile

Posted by Jessica | July 29, 2012 3:36 PM

I sit here in tears, grappling to find words.Thank you for sharing this, for fighting, for making the world a better place through your experience. So. Beautiful.

Posted by Fran Farber | July 29, 2012 3:40 PM

Sara, I now feel your grief and sorrow. Harry passed away on July 6th. His decline was rather fast. Couldn’t eat as he felt like he was full up to his neck.He coughed continually bring up phlem an was getting so weak. Late in the morning he got up to go to the bathroom to shave. Then we started to fix lunch. I was in the computer room doing something and heard a shuffle sound. I went into the kitchen, no Harry but the light in the hall bathroom was on and his cane in the kitchen. I went to the bathroom and found him slumped to the floor. He apparently didn’t even hit his head. He looked like he was sleeping and his coloring was beautiful—like glowing. I tried to give him mouth to mouth after I called 911 to no avail. They came quickly but he was gone. He was going on 91 years and we have been married 67 years. It has left a crater in my life. We had services for him at church and then drove up to Santa Fe to the National Cemetary when he was to be buried. He was given an honor guard and a 21 gun solute. I had prayed that he go first and go peacefully. God granted my prayers.

I am so happy that you paid us a visit while you were working in the Navaho Nation here in New Mexico. It had had a special meaning for me. I’m still NED but know it can happen at any time. My family have been very supportive.

If you are ever in NM again please come to visit.

With love,
Fran

Posted by Margaret Rogers | July 29, 2012 5:31 PM

Dear Sara,

What a wonderful tribute to Gregg.  You guys are amazing.  My husband, Butch, also has om with mets to liver and bones now.  We have been fighting mets for over 19 months.  Right now we’re on the mek trial.  I pray every day for a cure from this dreadful disease.  Margaret Rogers

Posted by Kathleen Babineaux Blanco | August 03, 2012 10:18 PM

Dear Sara,  Your story of the powerful love you shared with Gregg transcends your sorrow.  On behalf of those whose lives are in the balance, thank you for your dedication to finding a way to eradicate the ravages of ocular melanoma.  Many blessings to you as you journey through this difficult time.

Posted by Gurwinder | August 06, 2012 1:07 AM

Thank you for this post.  As i read it, I realized finllay why I avoid the upstairs of my house, going up only when necessary.  Even though there has been a lot of healing, the memories hit me as soon as I walk up the stairs toward my son’s room.  My heart beats faster, my jaw clenches. The half open door, the light from the windows, bring back memories that must be burned in my brain.  I wonder how he can sleep there when he visits.  Maybe it’s time to paint the walls and change the furniture.

Posted by Nolu | August 21, 2012 3:59 PM

For the first time since my diagnosis with breast cancer beginning of the year, I find the courage to read such stories. I am speechless somehow. I am also a psychologist like Gregg, who was so good at solving other people’s problems, but currently find myself so stuck and incapable of practising what I preached.

Its extremely difficult,intensely lonely journey, scary, confusing. I lie awake at night, tossing and turning, thinking about how my life will end. Not a day goes by without experiencing physical pain. The emotional wounds are even much deeper and I am somehow handicapped from going on with life. Everyday I think of how to end it all, without going through further pain and suffering. I’ve just turned 30 and it feels like my life has come to an end, only when I thought it was just beginning.

I wish I could say Im inspired from reading your story, but Im scared somehow more. May Gregg’s spirit continue to live

Posted by Elizabeth Izant | August 21, 2012 8:46 PM

Thank you for sharing your and Greg’s story. A friend of mine was recently diagnosed with this illness and I want to help her as much as possible. Your are a strong woman and a very loyal spouse. I wish you much happiness for the remainder of your life and hope that cancer can be stopped soon with the help of mutant genes reently discovered by some scientists at Case Western Reserve University in Cleveland, Ohio.

Posted by Theresa Wagner | September 28, 2012 5:42 PM

Sara, I just wanted to say that since joining the Ocular Melanoma Support Group, I have come to know you as an inspiration. What a beautiful story and as an OM patient, it makes me happy to know that you are an amazing advocate in fighting this horrible underestimated disease. Thank you so much for sharing. I will think of this story often.

Posted by Rachel | October 12, 2012 7:07 PM

Sara,

Thank you so much for sharing your story. I was led to you by Becky, who read a post on my blog recently about a friend of mine that lost her long battle with OM. Reading your story brought up so many memories - it is uncanny how much Gregg’s story parallels Kelly’s. I will keep you and your family in my thoughts and prayers.

Posted by Missy | May 28, 2013 6:11 PM

Sara, thank so much for sharing your story and pouring out your heart.  My hubby was diagnosed with OM in 9/12 and we received the news later that it is type 2.  I try to stay strong for him, but sometimes it’s hard.  Reading your story helps me to know that there are others going through the same thing, no matter how rare this disease is.  I am looking forward to walking in Miles for Melanoma in Denver next month.  Thanks for remaining strong and fighting for all affected by OM.

Add your Comment

Your comment will need to be approved before it appears on the site. Thanks for waiting.

Name:

Email:

Comments:

Remember my personal information

Notify me of follow-up comments?

Enter this word:

Here: