A Woman's Journey: A Stage 4 Melanoma Mom

>> Good morning, everyone Thank you, Johns Hopkins, for inviting me to speak here today and for your determination to cure cancer By researching and advancing the latest drugs in many clinical trials, you’re helping me survive A Woman’s Journey is the network needed to advocate for our health, to keep us connected with other females and physicians, and to keep us strong when life feels tough A very special thank you to my friend, Dorothy Blagrove, who joined me from Arlington, Virginia, my mother-in-law, Sonia Lersten from Albuquerque, and Lillian Lindell, her cousin from Tampa It means a lot that you’ve come here today My oldest child, several years back, was 12 years old and had just received an iPhone as a gift And that was around the time of my advanced cancer diagnosis It was a communication tool that kept both of us going I got a text one night that said, “Mom, are you okay?” And I could have yelled to the next room, “I’m just fine,” but I texted back (laughs), and I asked him if he wanted to talk and he said, “Yes.” That moment still brings tears to my eyes this day We sat on the edge of the tub, and he cried, “I’m not ready for you to die.” My three-year-old at that time knew Mom had boo-boos, and my six-year-old never wanted to talk about anything And my nine-year-old, interestingly he wanted to go to infusions and learn more systemically how do you get rid of cancer? My husband, an amazing soul, he was afraid How could he raise four young kids if I died? I wasn’t ready to leave them It was profoundly sad You can’t say everything is going to be fine, but what you do is you hug tight and you say I’m giving this all I have That was five years ago I’m honored to be here today in this beautiful city We snuck over to Palm Beach Island last night It’s phenomenal I’m a stage four melanoma Mom surviving cancer I’ve learned so much on this journey, and I will share with you today the guiding principles that I believe have really driven me to be here with you here today, to survive My first principle is listen to your gut instinct and act with a sense of urgency My original diagnosis was in 2003 when I found a small pinkish spot on my calf It didn’t even look like a typical mole And it was actually my mom who pushed me to the dermatologist when she noticed it changing And the dermatologist didn’t think it needed to be removed But I thought it was ugly, and I wanted it off my calf So I insisted get it off I was pregnant with my second child We were living in the United Arab Emirates in Dubai, and I flew to the U.S. for surgery And at that time the surgeon told me that I had saved my life by insisting the spot be removed because it had tested for stage one melanoma Vanity saved my life I was told there was a 98% chance that I would never see cancer again So fast-forward to a Wednesday night in 2012 Nine years later Nine years of nothing Nine years after my stage one melanoma diagnosis and several kids later, I was putting my then three-year-old to bed and I found a lump near my groin I went to my primary physician that Friday, and it’s important to remember these dates because this has been part of my drive to surviving I went to the physician on a Friday who said it could be the result of an ingrown hair I did not think it was an ingrown hair I remember crying alone with my baby girl asleep that night, because I knew it was more It felt like a marble, and it was on the same leg of my original diagnosis, just higher up At my insistence, I got an immediate referral

to an oncologist And I met with him three days later on a Monday Do you know how hard it is to get an oncologist appointment within a matter of days? The oncologist, who also suspected something, I could just see it on his face, recommended a surgeon who happened to be in the same building as he, and I went straight to the surgeon’s office They told me the surgeon was going on vacation and would not be able to meet with me for three weeks I was falling apart and I knew I could not wait three weeks My tears were real, and in front of 25 people in that waiting room I lost it, I cried I got in the door that moment I’m not saying to cry your way in, but it definitely worked (laughs) And I just sat, I remember, in the surgeon’s lunch area I just was a wreck I thought this is it The surgeon agreed to do the surgery before his vacation which was in two days From the time I found the lump on a Wednesday to meeting with the oncologist and the surgeon on a Monday and having surgery two days later, the time that lapsed was seven days Seven days And on that seventh day, I had one lump removed I drove that very same day to Boy Scouts camp to spend a few nights with one of my kids I couldn’t get in the water, but I was there to be with my son And it was at Boy Scouts Camp when I got the call that said I had tested for melanoma, stage three A few weeks later I had 22 lymph nodes removed from a phenomenal female surgeon, Dr. Lisa Jacobs at Johns Hopkins All nodes were clear Regardless of what the doctors told me, an ingrown hair, or the front office staff in the waiting room, “You can’t see the doctor until three weeks,” I trusted my instincts I forged ahead with a strong sense of urgency It was my life at stake Trusting my gut and progressing with speed have always helped me get closer to the finish line With the beautiful Florida sun, if there are spots or moles or something that seems off or odd-shaped or changing, go get checked Taking action can save your life like it has mine My second principle is leave no stone unturned I work for the Department of Energy, the National Nuclear Security Administration, and we are charged with ensuring our nation’s nuclear security is second to none That is the best I’ve served in Russia working to secure plutonium and highly-enriched uranium and helping consolidate the weapons from Belarus, Ukraine, and Kazakhstan I had visited many Russian closed cities The kind that are not on the maps, maybe they are today, but they weren’t then, and I required special access to get into these closed cities But sometimes I wonder, was my cancer triggered there? I visited a lot of Russian nuclear facilities How much radiation was I exposed to? I also served as the Department of Energy’s senior representative in the Middle East establishing key partnerships in the oil and gas industry and trying to build scientific partnerships to advance the U.S nuclear security agenda When it comes to securing materials to prevent nuclear-related technology from spreading globally, when it comes to protecting America, no stone should be left unturned And leaving no stone unturned applies to my cancer Learning I had cancer shocked me to the core from the first stage one diagnosis in 2003, when it returned and became advanced cancer in 2012, when it came back in 2014 to the liver, now stage four, when it returned to the liver in 2015, and when it reinserted its ugly head just last year outside of the colon wall, It felt like my life was over each time It did not and was not getting easier for me And I cried and I cried and I cried so hard each time it came back I’m really begin to think I’m a crier (laughs) My four kids would not have a mother, I thought each time Why doesn’t it get easier with no evidence of disease windows? I would not see my children go to prom, get married, have kids Cancer was a death sentence, I thought

My advanced cancer time frame 2012 to the present is an important time frame for melanoma patients In fact I’m told there is no better time to have melanoma (laughs) This is the great window There were very few options to treat melanoma prior to 2011 when the very first immunotherapy drugs were introduced Unlike chemotherapy, immunotherapy, It does not go after the cancer destroying the good cells and the bad It revs up your immune system to fight the cancer Chemotherapy knocks people down Immunotherapy drugs, while not a cake walk, can be managed, I have found Every time I’ve had a recurrence I have had to listen, I had the choice to listen to professionals and do simply what they said, or be proactive about my care, taking initiative And I chose the latter I developed a plan A and a plan B, and I always have a backup plan Asking questions along the way Making decisions, sometimes challenging what the doctors recommended, and I’ll tell you more about that And ultimately having enough information so that I could make an informed decision and feel good about it When you’re on a cancer journey, the decisions you make have to feel good to you I insisted on more scans than the doctor said I needed I researched and traveled all over the East Coast from D.C. up to New York I ventured out to Texas and visited the best oncology units I delved into reading more about alternative medicinal practices I said I wanted surgery when one doctor said stay on treatment I searched desperately for survivors across the country, and I reached out to them for advice and guidance I chose to develop my own plan that worked for me And as a result, I have a team of oncologists who consult with one another Dr. Evan Lipson from Johns Hopkins, close to my home, knows I started my journey with Dr. Anna Pavlick in New York When I saw Dr. Lipson recently, he volunteered that he would make sure Dr. Pavlick had the latest scan information, even though I wasn’t seeing Dr. Pavlick anymore, and I have this amazing oncologist Dr. Lipson You have got to meet him He took the time to call her, to email her, to share scan information, because it’s a very personal journey He knew I felt an emotional connection with her What an amazing mindset That is the type of doctor that you want on your side, and I don’t have just one doctor on my side, I have two The team of surgeons I have had seven different surgeons operate on me Four of those major surgeries: The first surgery, he told me I save my life when I had the stage one diagnosis, the one local hospital surgeon, the one I cried my way into, one from New York, one from MD Anderson, and three from Hopkins Dr. Marty Paul of Hopkins and then another amazing, amazing individual removed six inches of my colon Brought me in on a Tuesday, removed part of the colon, and I was out the next day And in 10 days I was doing light yoga He reinforced Dr. Lipson’s philosophy: I’ll share with anyone on your team That’s the type of surgeon you want on your side My alternative team, a naturalist doctor provides me with mistletoe The very mistletoe that you hang during the holidays Mistletoe has a history of medicinal use The European varieties have been used in traditional medicine to treat seizures, headaches, arthritis, hypertension, infertility and even cancer I do mistletoe injections regularly, injecting myself I know it helps fight cancer, builds immune system, builds the immune system and it give me a ton of energy I really don’t need Red Bull My mistletoe is just great The first ever mistletoe trial in this country is underway at Johns Hopkins as I speak That is incredible I dial up and I dial down on energy healing and juicing organic, acupuncture and therapy

Therapy and cancer go hand-in-hand, by the way. (laughs) Everyone needs a good therapist, right? I’ve had all the mercury removed from my old dental work Hired an alternative nutritionist, and I do meditation and yoga But there’s one foundation that never changes, and that’s God God was not in my life very much before 2012 when I had the advanced diagnosis And I wasn’t embracing anything We were living in Nicaragua and were about to leave, in 2011, when a missionary from the church that we went to came up to me and said, “I’m not sure why, but God asked me to seek you out.” I thought it was very weird So I had coffee with her and there were no light bulbs going off for either of us But I think in a very odd way, God knew I needed Him I just didn’t know it And when my love life fell apart, with stage three in 2012, things happened and fell in place with my opening the door a bit more to faith To call on Him for healing and pray And I’ve met so many people around the country I’ve been invited into a Bible study I can’t tell you how many people I have praying for me around this country And I have to pause and realize that strange, very strange encounter in Nicaragua I believe was God’s way of reaching out to me My third principle is, put your ego and humility aside I stepped down from managing 250 people and overseeing a $10 billion budget I needed time to get better, to heal, to survive, to be with my family, that’s all that really mattered I literally was falling apart I needed time to reflect, is this it? My agency, who I worked for, has been so supportive and to this day allows me to be an executive I’m not managing hundreds of people or billions of dollars While I’m on this cancer journey, I have been able to remain an executive and I am so grateful for that I feel like a shadow in the distance at work sometimes, there’s no question And I’ve had to put my ego aside I’m okay with not being at the leadership table Because my core is my family Putting everything I have into surviving and living each day is sacred and above all else I debated talking about the ugly side of cancer, the ugly things it does to you But I’m gonna take a moment and just share something And this has to do with ego and more humility and dignity I was traveling a lot to New York when I started my cancer journey and I did it all, trains, planes, buses anything to get up and back And I was taking the bus back with my sister one time and I was on an immunotherapy drug And we got onto the bus and I told her I wasn’t feeling great And I got sick and I passed out Apparently with convulsion-like movements And I came to, and I reminded my sister, “Oh, when I get sick I pass out.” It’s vasovagal syncope and, for the doctors in this room, I’m probably not even sure I’m saying that right But it’s not a serious or life-threatening condition It’s an abnormal reflex thing And I got sick several times on the bus and word had gotten to the driver that there was a gravely ill person passing out and convulsing up top So we pulled over and the ambulance comes I have to get off the bus and I know people were irritated I was holding them up And those Washingtonians had to get back to Washington Not much patience there And I just explained to the ambulance, “Oh it’s a reflex issue.” I left out the cancer part, because I thought I would really be holding up that bus (laughs) And so, I got back on the bus, and I moved downstairs, and you should have seen, everyone just moved upstairs And guess what, you get the drift Things did not go well the rest of the ride And this time the bus pulled over again and off I went into an ambulance, to who knows where I had no idea where I was In the middle of somewhere, I think it was Maryland There are many times when I’ve crawled to the bathroom on the floor Where I went shopping with my uncle and kids and had to throw all the clothes in my arms, handing them over to my uncle and racing out to the car because I couldn’t take it I was not well To step out of a big job, to have no control over your body in front of dozens, pulling over while my kids are in the car, explaining to my youngest two,

I’m going to get sick, I’m going to pass out I will be back in about 30 seconds To lay down in the park, I remember this so vividly, while my daughters had to rush and go find help I literally had to lay down in a park That is ego, dignity, humility and pride aside That is cancer But I’m still here today My fourth principle is the importance of a strong network around you Networks are vital to our success Both personally and professionally Those friends who just make our days happier These are the circle of people who you want on your side, to help keep you positive, to build up your confidence To provide you with a lending hand to accomplish your goals And my goals were, and are, simple It’s to live and to fill my kids’ lives with memories I’ve learned some networks fail you But they either come around or you have enough of a network that you rely on those who truly back you My 77-year-old dad has never missed a surgery This past one, he slept on the couch in my room And the one before that, in a chair I am sure that chair was not comfortable, sleeping in all night long When I mentioned that some of my hair was coming out, on one of my treatments, and mind you, on immunotherapy, I never experienced full hair loss, like on chemotherapy But my dad, when he heard, “Oh, some of her hair is falling out.” I really think he thought I was going to lose all my hair So, what does he do? My dad lives in Wyoming, that is an important point He shaves his entire head And sent me the picture, and I thought, oh boy I cannot send him a photo, or FaceTime or Skype with him for a while. (laughs) What the heck, he just shaved his head in the middle of a Wyoming winter My dad is part of my foundational network My mom comes out every surgery and is armed to cook and get my weight back My community has helped me and made sure my family was fed And my friends, many there, and some not You lose some friends, on a cancer journey I didn’t expect that I thought friends were always thee for you And my husband, who has grown on this journey, he’s there for me every day I’ve made sure that I have had, and have a healthy network Learning to ask for things, so unlike my character If you knew me, you’d be like, “Oh, she does it all.” I have learned to ask for help My network consists of people who will never take a break or deviate from supporting me Their feedback, honesty and dependability helped me grow and overcome the challenges I faced Because none of us can do it alone, or at least effectively My fifth principle is uncertainty and staying on course The fear, the anxiety, that goes with each scan never gets easier I’ve had almost 35 scans in the last five years Very three months, I go through the cycle of, “Is the cancer back? “Why can’t it just go away?” and when it comes back, like it did last March, (sighs) I was heartbroken How in the world was I gonna break it to the kids again? Life seemed to be getting back to normal and I had to tell them, “Mom’s cancer is back.” And I won’t tell you the words my 16-year-old son used (laughs) The first time I probably didn’t say, “Don’t use that language.” and with my work, I have so much drive, but I wonder, should I step up again? But what happens if the cancer comes back? I wish I could say, “I’ve got this.” But I don’t There are so many fears and worries and the truth is, there’s many times when I’m sad, I’m scared, I’m angry And there’s many times when I find myself okay Right after a scan, if I get the news it’s all clear, oh, I feel like celebrating I feel that is the time where you will catch me in my best mood ever There are times when I do, I have courage I have mental strength And I simply think, I’ll just do another surgery because I can My melanoma has not proliferated to the point of interoperability It’s been one tumor So surgery is part of my game plan

There’s such great uncertainty and challenges not just about the cancer unknowns, but about financing cancer We’ve been out of network with some and in network and, I tell you, we have accumulated considerable debt Debt that we are still paying off And then you add in the alternative treatments on top of that There is no question, cancer is not cheap But you do anything to survive Because I have four kids I have a family A life that I am not done living I don’t care what the cost is I will pay what it takes to survive And let me tell you why I’m still living Much to do with my mental courage and strength but also the latest, incredible immunotherapy drugs And I’m gonna spend just a couple minutes talking about them Because many of them are the way of the future There are so many clinical trials in immunotherapy drugs that John Hopkins os on top of, and is at the cutting edge point on, that it gives me such hope Many trials that have been developed in drugs since 2011, 2011, and it’s allowed me to live hard and to live fairly normally And I’ve been able to manage the side effects, to spend quality time with my family So shortly after that 2012 stage three diagnosis, and lymph node resection, I went on a clinical vaccine trial Our family traveled to your beautiful state of Florida I think I want to retire here, by the way, it’s beautiful (laughs) We went to Disney World several times Our kids were so young And other then flu-like symptoms, fevers and chills for a couple of months, I was fine I could deal with the flu for a couple of months You know how rotten you feel when you have the flu? Just have it for a couple months But I could deal with that Almost 1 1/2 years of no evidence of disease the cancer returned to the liver in 2014 And I have to tell you just, (sighs) I will never forget when somebody told me that and it was not at Hopkins But a physician aide came in and said, “Well the good news is, it didn’t go to the brain.” and I just stopped right there and thought, oh my God, well where did it go to? The bedside manner, it was horrific It was not at Hopkins So it returned to the liver in early 2014 And after a very tough liver surgery, done robotically, I went on the drug Zelboraf Zelboraf is a targeted therapy that blocks the function of abnormal molecules to slow the growth of melanoma My hair, that’s when it got super thin No ounce of tolerance to the sun Sunscreen is always essential, right? But on Zelboraf, if a single spot was left uncovered from sunscreen, I would develop this major red, painful sunburn I developed a rash all over my body Not just a normal light rash It was, yeah They should have put me on an island and just kept me there isolated And they had to reduce the drug to the minimum level and I could not complete the full course due to the toxicity But, while on Zelboraf, and this is the fun part While on these targeted drugs and immunitherapy drugs, this time, summer 2014, we went to Iceland and the blue lagoon Norway, visiting my sister and husband in the fjords And seeing my kids plunge into the glacier water And England to see more family, going to Charlie and the Chocolate Factory in London’s Theater District Going to water buffalo farms with Dorothy in Italy Seeing 20 Maltese friends in Malta, who I studied with 25 years ago And learning how to scuba dive there And being at the very, very tip of the Italian boot in Sicily, Susan, you gotta try it All while on the melanoma-targeted drug Zelboraf I could live I could manage Another liver surgery, so there was another year of no evidence of disease, and then my cancer returned again in early 2005 Another liver surgery, and a tough one The liver just, ooph, tough surgery I went on my first immunotherapy drug Yervoy I cannot say the way the medical drug name, so forgive me, but like, ipilimumab, something like that

The drug was the toughest one and kept me closer to home because one wrong dietary choice, I was in an ambulance recovering at the hospital My diet consisted of pasta, rice, eggs and meat And resulted on about 20 pounds of weight loss Who needs Jenny Craig? (laughs) Yervoy administered intervenously, was originally approved in 2011, to treat late stage melanoma Yervoy works by allowing the body’s immune system to recognize, target and attack melanoma cells, melanoma tumors This drug gave me the largest window of no evidence of disease 2015 to 2017 And for my 50th birthday, my girlfriends and I traveled to Peru And we climbed the Salkantay peak, the back way into Machu Picchu And reaching almost 16,000 on our climb at the very peak This was my first major mountain climb, on my cancer journey Then I had another, that was the 2000, the two years of no evidence of disease, I thought I was out of the woods Some say stage four melanoma patients will experience a 90% return Dr. Lipson, from Hopkins, says it’s difficult to estimate disease recurrence rates in patients with stage four melanoma, largely because the response to the therapies vary so widely And in terms of the five year survival rate, for patients stage four melanoma, my situation, it was about 15% a few years ago My survival rate, five years, is about 30% now, it’s doubled So the cancer came back in March 2017, now outside of the colon area And I tried Opdivo, the sister drug to what President Jimmy Carter used for his melanoma, that had reached the brain Opdivo works as a check point inhibitor, blocking a signal that would have prevented activated T cells from attacking the cancer That’s clearing the immune system, having the immune system clear the cancer out Opdivo did not work for me I moved on to a clinical trial, Opdivo plus, called LAG-3 It’s a cell service molecule expressed on activated T cells And the hope was that this combination would do the trick So remember I had a four-inch tumor on the outside of my colon While on this clinical trial, I was on a very strict two-week infusion schedule And my main side effect was exhaustion But that did not stop me from traveling to Japan with my eldest child for a one-on-one trip I told each of my kids, “When you’re 15, we’re gonna do a one-on-one trip.” Because I figure after 15 you start losing them, right? They’re just like, “I don’t want mom.” So we went to Japan And this was the same child, four years earlier, who I sat on the edge of the bathtub with, sharing tears Because we didn’t know if I was going to survive I had an infusion on a Tuesday, got on a plane on Wednesday and flew to Japan, climbed Mount Fuji, the second major mountain, with cancer, and eight hours in the rain climbing that mountain, we reached the top at 4:00 a.m. and caught sunrise My son’s first ever sunrise And after 12 days, we returned to the US and I made my infusion the very next day, upon return from this most incredible and memorable trip As a result of our trip, my son wants to continue his Japanese studies and move to Tokyo one day Do you know what this means to a mom with cancer? To see something sparked in your child, to know that they’ll have a future, they need their mom But he will be okay And after returning from Japan, the scan showed minimal tumor shrinkage It was then that I decided I wanted surgery I had differing opinions And I went with my gut The medicine was not showing astounding results But perhaps I didn’t give it enough time I was not willing to wait And it’s okay, because for me surgery was the way to go And Dr. Lipson at Hopkins recently told me, “Cindy, you do really well with surgery “We need to keep that in mind should there be recurrences.” He saw a different person when that tumor came out I recover quickly

I have had operable tumors And so, as I’ve said, surgery is just part of my plan Yervoy, the drug I did, the first immunitherapy drug, Opdivo, the second one, and LAG-3, all three of these drugs work by allowing the body’s immune system to recognize, target and attack cells in melanoma tumors And a major component of Johns Hopkins research right now, involves discovering which of these medications and others like them, are effective in patients and why So even though these drugs didn’t provide a cure for me, or showed the significant results that I wanted to see, I am relieved to know that Johns Hopkins is examining why Why do these drugs work in some and not the other? The melanoma immunotherapy drugs have no doubt extended my life And there are many combinations of melanoma drugs, many clinical trials, that I haven’t done So, while I’ve done the FDA approved melanoma drugs, there’s different options You can mix drugs, you can combine drugs There are many things I have in my back pocket And my windows of no evidence of disease that allows for more time, for more drugs, to get to the FDA finish line My December scans were clear And my kids, now eight, 11, 13 and 16, still have a mom for them every day I’m in a watch-and-see mode And with my next PET and CT scans in March, my care is ongoing and that is just my life But the longer I survive, the more option I have And all of us should remember that So in conclusion, why did I get melanoma? Was it the baby oil sunning, tanning days? I know some of you out there did it too. (laughs) The blistering sunburns in childhood, I used to go skiing in Steamboat, not an ounce of sunscreen on my face Or is it genetic? My 53-year-old sister developed stage one melanoma two years ago Actually I think it was three And then just had a stage one recurrence last year No one can tell me exactly why How does one live scan to scan, wondering if in a three month time frame that cancer’s coming back? I’ll be honest, it’s hard And the nights, oh, nights are hard for me They’re quiet, they’re scary, they’re lonely The thoughts that pass through my mind at nighttime, they’re chilling There’s not one day that goes by when I don’t think about my health And the chemotherapy ward, where you go for immunitherapy infusions, among the many sick, receiving my infusion, I don’t feel like I belong there but I am there I don’t feel like I deserve this I’ve learned so much To love harder, to be kinder, to be more compassionate to yell less, although my kids still would disagree I yell But I try to yell less I don’t feel my family deserves this, to have a mom or a wife who is sick But we are in this space I will live each day with or without melanoma I beat the odds five years ago And when I thought cancer was a death sentence, it was not I treat it like a chronic illness And I am wondering, what mountain will I climb next Thank you (audience applauding)