May 1, 2016

In honor of melanoma awareness month, I couldn’t decide if I should pay tribute, provide encouragement, or offer warning. So I think I’ll do all three.  And I’ll start with this:

To my loves who live  on in our hearts, thank you  Thank you for the privilege of witnessing your fights. Thank you for showing us all what it means to be strong. Thank you for the laughter, the smiles, the expressions of love that eased all of our pain. You have shown us all how beautiful raw humanity can be, and that when you peel away the layers of life’s unimportance, you are just left with love.

To my warrior brothers and sisters in the midst of battle, keep going. One step at a time. One surgery at a time, one treatment at a time, one nightmare-filled restless night at a time, one desperate agonizing wait for scan results at a time. You can do it.  In the midst of the pain and the fear, stay focused on the hope.  Keep your eyes open to the love you are being shown, the clear sense of life’s priorities with which you’ve now been gifted, and the fact that you are now, and will forever remain, the strongest people I know. The nightmare will end and you will be free again, I promise. And when you are, you will revel in the beautiful lesson you’ve learned, you will be constantly amazed by everyday life, and you will know, with certainty, what true happiness means.

To my survivor soulmates, celebrate. Celebrate and advocate. Keep those amazing lessons close to your hearts, and never forget that now is the time to thrive. Thank you for your continued friendships and support. Thank you for picking me back up on those days where my own lessons are just out of reach. And please, spread your wisdom and your love to others who are not as far along in their own journeys. They need you just as much as I do.  The world is a better place because every single one of you is still in it.

To the doctors who are saving our lives, gratitude does not even begin to cover it. It is only because of your commitment and dedication to finding improved treatment options that we are still here. It is you to whom we pray. They are your faces we see in our minds as we beg desperately to remain. It is your every word, every touch, every encouragement to which we cling. And it is you who are delivering us from evil.  Keep going, never be satisfied; we are making great progress but there’s more work to be done. We need you. Our children need you. And we are thankful for you with overwhelming awe every single morning we open our eyes.

To my amazing friends and loved ones who fit none of the categories above, you’re the best. It is you who give me a constant reminder of what it means to be alive. It’s your laughter and light and fun and love and everyday conversations that kept me from traversing that fine line between hope and despair. It is you who brought me back from the breach to live again. Thank you for your strength, your shoulders, your guidance, your love, and your unwavering hope. It is you who are my greatest delights.  And to my sweet Jeff and perfect baby Kai (who is now 5!), you are the reason for everything.

To everyone reading this, check yourselves and protect yourselves. Check for irregular moles and lesions – even let a dermatologist do it for you, at least twice per year. Always wear sunscreen, and especially protect those little ones.  Just one blistering childhood burn doubles your chance of developing melanoma. Stay in the shade, and protect your skin. Stop tanning!  It isn’t beautiful, it’s deadly. Learn more here: www.melanoma.org and here: www.curemelanoma.org and here: www.melanomainternational.org. Find information about clinical trials here: www.bethesdatrials.cancer.gov and here: www.clinicaltrials.gov. And if you or anyone you know needs help, reach out.  I’m here for you as are hundreds of others, and we would be honored to know you.

It’s been 5 years since I was told I had 6 months to live, and it’s been 3 years since that first amazing scan showing no evidence of disease. But it is only recently that I have truly been brought back to life.  It is only recently that I’ve remembered what it feels like to be really alive.  The years of living with a self-preserving disconnect between body and mind are starting to dissipate, and I am becoming whole once again. And all the parts of me that went to sleep during the past 5 years are starting to wake up.  All the time I spent hoping against hope just to survive, has been answered 1,000 times now that I also remember what it means to be alive.  And for that I am thankful. Melanoma, nobody wants to meet you, but for those of us who do: for every single life lesson you've taught me, and for every beautiful being I am blessed to know more fully because of you, I am thankful. 

November 26, 2014

It has been years since my last post.  I’m just going to relish that for a second. It has been two,  delightful years of totally clear scans (no evidence of disease); wonderful family adventures; awesomely mundane daily living; and fantastic smiles, hugs, and kisses from perfect baby Kai who is now 4 years old. And right now, more than ever, I am thankful. I am thankful for life. I am thankful for my amazing life. I am thankful for how full my amazing life is with pure love, friendship, happiness, joy, and satisfaction.

When I was in college, during one of our routine middle-of-the-night coffee shop philosophical discussions, my friend, Miguel, asked us all to look into the future and then look back at ourselves as we were that day and describe what is different between the then present-time self and the projected future self. We had various, profound, 18-year old answers, like “that’s when I decided never to let society hold me back,” “that’s when I was able to stick to my ideals,” and, more truthfully, “that’s when I used all my laundry quarters on pinball.” But at the time, the single most important aspect I projected onto my future self was simple satisfaction. I hoped with all of my might for the simple pleasure of someday being able to look at my life and say, “Oh good, I’m okay with all of this.”  That’s it; that was the best I was hoping for. Well 20-years-ago me, brace yourself, because you’re about to get a big dose of holy-crap-didn’t-know-it-was-possible-only-read-about-it-in-books-pure-life-ecstasy slap across the face (and on the leg, and in the liver, and in the pancreas, and pretty much everywhere actually).  

Of course I am so very thankful for beating cancer. But I am also thankful for having cancer in the first place. Because it’s true what they say, you don’t know what you got until it’s (almost) gone. And when it is almost gone, what bubbles to the surface is every human connection, every minute of love, every one of your grandmother’s cookies, every silly song and dance routine between friends, every night you are blessed to sleep in a warm house, every ridiculous outfit laughed about later (I’m talking to you colored, footless tights under jean shorts), every bit of praise, every rallying cheer, every ounce of parental love, every bright beautiful flower, every rainbow, every sandcastle built with your uncle, every feeling of success no matter how small, every act of courage, every shining look of approval in your partner’s eyes, and every child’s smile of delight. These are the things that fill our lives. These are the things that give us meaning. These are the things that should define us. And for this understanding, melanoma you crazy bitch, I thank you. In your attempt to take away everything I have, you have given me the ability to truly acknowledge all of life’s wonder. In your attempts to destroy me, you have made me more appreciative, more confident, more aware, more compassionate, and above all more thankful. There is not one thing I own that will ever be as great a gift as the lessons I have learned. As I think about the many wonderful things I am thankful for, I won’t forget to list the little things.  Because it’s the little things, all added together, that are the true meaningful of life. And for that, I am thankful.

I have had several requests to update this blog so that people would know I am okay. I am wonderful. I am here.  Thank you so much for your continued concern and support. If anyone needs help, please please please reach out and ask. If there’s anything I can share with you (lessons learned, treatment options, where to go for information), I would be overjoyed to do so.

Have a wonderful holiday, everyone, and may we all give thanks every day.

December 14, 2012

A good friend of mine just brought it to my attention that the blog has “suffered six months of silence.” I apologize because I have not been looking at it this way. Let me assure you that during these six-months of blog silence, every day has been filled with the wonderful, amazing, incredibly loud singing of normal everyday life. And to be finally consumed again by everyday life is the exact luxury for which we fought and cried and screamed our way through melanoma’s song-stifling encapsulation.  There has been no suffering in my silence. There has been only living. Sweet, glorious, exhilaratingly mundane living. And there has never been anything in the world for which I am more thankful.

The news continues to be miraculous. I am down to one tiny, subcutaneous tumor on my back. A few months ago, we realized a new tumor in my arm, which resulted in full scans including a PET scan. While the tumor did prove to be melanoma, the PET scan showed that this tumor and the tiny one in my back were the only cancer I had left. This means that all of the shrinking remnants we had been following have been confirmed not to be cancer anymore. I went from more than 30 tumors, including those in my liver and pancreas, down to two tiny, harmless subcutaneous tumors. They removed the tumor in my arm, because they have not been monitoring my arms and legs and have no way of knowing if it was a new tumor or something that has been there all along. So now there is one. One little hanger on to remind us of the lessons we’ve learned and to keep us grounded. I don’t mind this tiny passenger. A lot of beauty was revealed through the horror and there is a part of me that is not yet ready to fully let go. I will take you with me for the ride, but hang on if you’re coming because while I may turn to you for guidance, I will never let you slow me down.

The transition from patient to survivor is difficult to describe. The all-encompassing, life-consuming, soul-wringing intensity that you live with every single day, not only takes an extreme emotional toll, but also translates physically into the equivalent of a long-term sustained adrenaline rush. Your body is in “fight” mode 24 hours a day, 7 days a week, for months and even years. When you receive the amazing news that this part is over, while it is absolutely fabulous news, it doesn’t work like a switch to turn off your body’s stress response. There is a purgatory between being told you are a survivor and getting to be a survivor. There is a time when your mind and body are working to “normalize” out of this constant intensity and regain their footing outside the boundaries of cancer’s realm. I had a constant, unrelenting need to focus my adrenaline somewhere. And this was paired with a constant, unrelenting frustration in not having a focus.  And this combination was then paired with a constant crushing guilt that I was not grateful enough for this miracle. But, thankfully, time marches on and during this march the deafening clamor of the full performance band quieted to a gentle rhythm and I have begun to dance with freedom once again.

So for these past six months, I have been being patient with myself; letting my mind and my body unwind the knots that were intricately woven during the past two years. I have been reintroduced to “normal” life and I have found the steady beat of being a wife and a mother, working full time, raising a toddler, enjoying my husband, reviling in my friendships, and rediscovering who I used to be. This reintroduction is an undefined process with no completion date. But at least I am at the point where I am okay with that. I am at the point where I can just be. And the way I be, is thankful. Thankful for my every-day cares and concerns, and thankful for my every day.

We told Kai about Santa Claus a few weeks ago and it has consumed his every fiber. He wants to read Christmas books every night and talk about Santa and Christmas and trees and decorations all the time. He is in love with the Christmas magic and it is wondrous to behold. There was a time when I was sure that I would never tell my kids about Santa because I felt it was a lie. But if this experience has taught me anything it is that we all need some magic to hold onto in our lives. And my mission in life is to fill Kai’s world with as much magic as possible, to build a foundation of wonder and belief, so that if he ever needs it, he will always have a full stockpile of hope to tap into. We have taken him to see Santa in person twice already, and since he’s only 2, multiple Santas just mean more Santa fun. Both times he told Santa that he wants cars, trucks, and trains. And, of course, Santa will bring him cars, trucks, and trains. Last year, all I wanted was to be here to celebrate this year.  And, just like he will for Kai, Santa delivered. Santa, in the form of science, dedication, and love, worked his magic to save my life. In this world of chaos, of constant consuming, of crisis, of complexity, of condemnation, there is a fundamental need to believe in magic. Sometimes, just sometimes, when you let your mind relax, put a smile upon your face, and relinquish control, you can see Santa off in the distance with a twinkle in his eye. And in this second, when your true desires are clear, you can be confident that you will get everything you want that year. May we all get everything we want this year.

Today I am thankful for magic. I am thankful that I am here to see Kai’s first exposure to Santa; I am thankful for our upcoming trip to New Mexico, which will be our first time there in three years; I am thankful for the holiday season of magic; I am thankful for all of our fabulous friends and family; and, as always, I am thankful for my sweet sweet Jeff, the very best husband in the world, and for our wondrous baby Kai. Of all the magic I have ever seen, you are by far the most awesome of all.

June 5, 2012

One, small, harmless, subcutaneous tumor: that’s all that’s left! The most recent scans showed that of the more than 20 tumors with which we started (including those in my liver and pancreas), just one small subcutaneous tumor remains. I am almost completely disease free! While I was expecting good news, this news is so far beyond anything I was expecting that it has caught me totally off guard. I realize over the past weeks that I have officially started thinking of myself as a survivor rather than as a patient. And the difference between those two definitions is astounding. These latest results are the green light to my life. My thoughts are now dominated by planning for my after-cancer future, rather than by wondering if there will be a future. I can now decide how to shape my life without cancer, rather than find ways to fit my life around cancer. Not that I will ever be without cancer. Even if it leaves me physically, it will forever remain with me emotionally. With a lot of luck, I may not always be a cancer patient, but I will always be a cancer survivor. And that is a badge I will forever wear with pride, with strength, with wisdom, and, most importantly, with compassion. Herr Nietzsche, sie sind richtig: that which does not kill us only makes us stronger. Life experiences are a workout for the soul—no pain, no gain. And for that, I am thankful.

We are in the process of defining our new normal. I am back to work, and Jeff continues to work full time, but we are being careful not to lose sight of a bigger life picture. We are doing our best to stay involved and be mindful about participating in events with a greater purpose. In May, we attended the Melanoma International Foundation’s annual Safe From the Sun walk and fundraiser. The event raised almost $150,000 for melanoma awareness and research. Our team (team Melanoma Mom) won an award for raising the second highest amount of money out of all the teams that participated! We raised more than $11,500 and 86 people attended the event in person as part of our team. Thank you so much to everyone who donated and participated. With special thanks to Dana and Sean for organizing and managing the team (and making the awesome T-shirts). Not only did we, as a team, make a huge difference for the MIF, it was also extremely meaningful for Jeff and me personally and we are deeply touched by the enormous amount of support we were (and continue to be) shown. Thank you, thank you, thank you to everyone who cares about us so much that you donated your hard-earned money to further this cause and took time out of your busy lives to support us in person. Two weeks ago, Jeff and I attended an event with the Melanoma Research Foundation through which we lobbied for melanoma-related legislature. Jeff and I met with Senator Barbara Mikulski’s office to ask for continued/increased funding for NIH and NCI, as well as stricter regulations on the use of tanning beds by minors. This weekend, I also met our state senator, Jamie Raskin, and was able to thank him personally for his support of tanning bed restrictions for minors. He told me that the last time the bill was up for vote, it stalled at 3-3. Unfortunately, much like the tobacco industry, the tanning bed industry has a significant amount of money to pour into lobbying efforts and they were convincing enough to stall the bill this time. Also, new research findings regarding melanoma treatments were presented at ASCO’s annual meeting this past weekend. Jeff attended the meeting for work, and tweeted the findings (as melanoma mom). He continually tweets, as melanoma mom, important information about current, new, and clinical trial treatment options for melanoma. He is a great resource and I urge you to follow him if you are looking for this type of information.

In baby Kai news, our perfect baby has magically turned into a phenomenal little boy, full of smiles, wonder, and uncanny life understanding. He’s absolutely amazing. He is almost 20 months old. I cannot believe he was only 3 months old when this journey began. At that time, I didn’t know if I would see him turn one. But now I know that he will be gifted by my nagging (umm I mean loving and shaping) for many years to come. He is running (which he does around and around the dining room table while yelling “FAST” and wearing a blanket as a cape), is talking more and more every day, knows all of his colors, can identify letters and numbers, and is totally obsessed with books, cars, and animals (he even has a book that has wheels and shows pictures of dogs riding in cars, which I think blows his mind). He continues to be the most perfect baby ever made and I am confident that that opinion is completely objective.

While every ounce of my being rejoices at the success of the TIL IL-12 treatment, the space between patient and survivor is a blurred, tumultuous existence. During the same time we have been celebrating our success, a chasm of emptiness and injustice has been created by the loss of our friend, Jake. Jake passed on Friday, in hospice, with his wife, Linda, by his side. Although melanoma ultimately claimed his body, he remained Jake until the end – never allowing cancer to penetrate his heart or his soul. And that is the measure of a true victor. He lived as he fought, with passion and love, and I am sincerely thankful for the important lessons I learned from him. From Jake I learned that a smile always accomplishes more than a scowl; that everyone is your friend even if you haven’t yet met them; that it is up to you to live your dreams; and that the more love and happiness you put out, the more that will be returned to you. Smooth journey my brave warrior friend. I weep for those who love you, but smile for your serenity. Cancer is like a personal terrorist. It starts small and attempts a hostile takeover of your entire body. It consumes your person from the inside out, racing through your system and showing no mercy. It uses force and fear and violence to control you. It tries to claim your body, your life, your time, and your dignity. But reacting to it is a choice.  We may not have a choice about whether it claims our bodies, but it is up to each of us to defend our hearts and minds. Just as Jake remained Jake, it is up to me to remain Jamie. Thank you for leading by example, Jake, I will forever borrow your strength when my own is lacking.

This journey is not a measured hike through the woods, where, if we just keep walking no matter how tired or hungry we become, we will eventually break through the trees and end up at our destination. This journey is a rollercoaster; a constant, violent propulsion between joy and sorrow, between hope and despair; between existing and living; between gratitude and anger; between power and fear. There is no middle ground; you are constantly hurled from one extreme to the other. It is continuously emotionally exhausting. There is not enough time and that is coupled with knowing that there actually might be not enough time. It is a race to live.  Even after the treatment is over and I know that it is working, it is a race to live. How should I live? What should I do? How do I fit my priorities into my responsibilities? Am I doing enough? How can I help more? How can I quiet the screams in my head that are constantly, unrelentingly demanding that I define my new self? Melanoma has woven an intricate web around me and every day is a struggle to break free. She is my capture. She is my keeper. I try every minute of every hour of every day to annihilate her. But she is my silent partner. She shapes my thinking, she expands my compassion, she forces me to try harder. She shows me that I am stronger and more powerful than I ever knew. She, who is trying to kill me, is showing me what it means to really live. And, in true Stockholm syndrome fashion, I love her. In spite of the horror of being propelled from one unknown to the next, I ride this rollercoaster with my arms in the air, yelling WHEEEE in exhilaration, confident in the fact that it will one day slow to a more manageable speed. And in the meantime, I consciously decide to enjoy this ride, take full advantage of the intensity it provides, and remain thankful for each climb to the top, each race to the bottom, and each life-altering loop-de-loop along the way. I hold onto a confidence that it will continue to lead me to tomorrow and that, eventually, the chaos will give way to a quiet that will offer the foundation for the next phase of my life. And for that I am thankful.

So here’s to NED. After our recent fabulous news, it is entirely possible that the next scans may show no evidence of disease. Come on little tumor, fade away with your friends, we don’t need you anymore. When you leave my body, I will carry you in my heart with the others, as a constant reminder to never ever take anything for granted and to choose every day to be thankful for the beautiful, love-filled life I have been given. I will carry Jake there too, to remind me that no matter what happens to my body, I am responsible for the upkeep of my soul.

Today I am thankful for our awesome scan results; I am thankful for the ever-expanding embrace that NCI and the greater melanoma community wraps around us; I am thankful for the extremely generous gift of UV-protectant clothing that UV Skinz sent to Kai (www.uvskinz.com UV Skinz was started by a woman who lost her husband to melanoma at the age of 32, she is now dedicating her career to creating clothing for children and adults that provides extremely important, highly effective protection from the sun): thank you for the essential gift of keeping my baby safe this summer; I am thankful for everyone who participated through donations or in person as part of the MIF’s Safe from the Sun event with special appreciation  to Brad from EI Home (www.eihomeonline.com) who held a candle-selling fundraiser that raised $1,600 for our team; I am thankful for clinical trials and the extraordinary successes they are creating; I am thankful for our amazing family and friends; and, as always, I am thankful for my best friend, my partner, my soulmate, my sweet sweet Jeff, and our perfect baby Kai. There is no doubt that you will soon be able to outrun me physically, little one, but I promise you that my love will keep pace with you, every step of your way, propelling you toward your goals and pointing out all of life’s splendor along the way. Throw your arms in the air, my wondrous baby Kai, and yell WHEEEE as loudly as you can.

April 6, 2012

I started back to work this week. It was infinitely better than I expected. Not that I wasn’t excited to see my MMG family or thankful to have such a wonderful job to go back to, but I thought it would be more difficult to make the switch back to “normal.” Thankfully, we are so busy that I had to jump right back in and it was eerily like I had never left. I’m only back three days a week for the first few months, so that is making the transition easier.  We are slowly, slowly regaining more pieces of our former selves – allowing life to take center stage while cancer waits in the wings. Sorry cancer, you’ve become too weak to perform, life is taking your role now. And so we exist each day: doing chores, making dinner, committing to events in the future. Every part of our former daily routines that used to feel like such a bother, are the exact things that remind us we are alive – that we are back – that we finally have the freedom to worry about things that have no bearing on life-or-death outcomes. The Spring sun shines brightly, offering new beginnings and promising renewed opportunities. And for that I am thankful.

In the act of “returning” it seems almost like the cancer never happened. It is a surreal memory mixed with new self-identification mixed with a hazy understanding that it might not be over. I don’t know where I am. I don’t know who I am. I am walking a tightrope, standing in the middle, not looking forward and not looking back. Over one edge is the painful memory, which is not really a memory but more of a permanent piece of my being, of the horrific-ness of the past 18 months. Over the other edge is a crushing pressure to live all of the lessons I’ve learned, to wake up thankful every morning, to exhibit nothing but love and grace. I am stuck here in this middle place. And I am terrified. I am terrified of never being able to move forward. I am terrified of moving forward too quickly and losing all of the lessons I have learned. I am terrified that I won’t be able to become the person I want to be – that I will never be the friend, daughter, wife, mother that I’ve promised to become. It is like I have broken free of captivity but am forced to carry my captor with me everywhere I go. And feeling this way makes me feel a guilt that crushes my soul. How dare I feel anything but an overwhelming sense of gratitude and love? What right do I have to experience any negative emotion at all when I am, so far, being given the ultimate gift of a second chance? Every time I feel sad or scared or angry, I feel like I am looking my fellow warriors in the eyes and slapping them right across the face. My treatment is working. All of our wishes are being granted. I am experiencing the results that every patient hopes for and I am not appreciating it enough. I am teetering on the edge between life and death, while simultaneously struggling to remember that it is even part of our lives. It is like I am caught in a dream where I can’t run. I know where I want to go and I cannot get there no matter how hard I try. I am constantly, every second, trying to define my new self. I scrutinize every one of my actions, thoughts, emotions, to determine how it fits my survivor self. Everything is the wrong size. Everything needs to be tailored. I am exhausted. And even just writing this makes me hate myself.  

But this is the truth. This is what it is. Death has tapped my on the shoulder and I cannot shake his icy touch. He is one step behind me at all times, reminding me that no matter how “back-to-normal” my life may seem, I have forever relinquished control.  I cannot run; he clings to my legs. I can only stand my ground and fight. Fight for myself and for all of my cancer brothers and sisters.  Fight for the researchers who are devoting their lives to finding us a cure. Fight for the all of the loved ones of people with cancer who stand by us every day, experiencing just as much if not even more pain and emotional trauma than we do. The desire to lash out, to take action, to scream from the mountain top boils just under my skin, making me restless like a caged animal. I am an amateur in this ring. I need someone to train me, to tell me what to do. How can I fight? What can I do? Yes, I can remind people to use sunscreen, and I can blog about the importance of clinical trials, and I can support the banning of tanning beds, and I can tell everyone I know about the amazing treatment opportunities at NCI. But I need something bigger than that. I need a louder voice. I need to be doing every possible thing I can or I will break. That is not a metaphor. This need is so overwhelming that it is threatening to drown me. I have this fight in me; I just need the chance to unleash it. I will find a way. I have to find a way. I have a debt to repay and the rest of my life to do it. And for that, I am thankful.

Today I am thankful to rejoin my wonderful MMG family; I am thankful for all of the amazing warriors we have had the opportunity to meet through this journey; I am thankful for the IL-12 treatment that is curing me and will no doubt cure our new friend, Angela, as well – stay strong sister we are with you; I am thankful for every comment posted to this blog – if anyone has any questions for me or wants to get in touch one-on-one please feel free to email me at melanomamomjg@yahoo.com, sometimes I am unable to reply to posts asking for my assistance due to the nature of the blog; I am thankful for our amazing friends and family; and as always, I am thankful for my fabulous husband, Jeff, and our perfect baby Kai. I hope that you too learn to fight, little one, but I will do everything within my power to keep you out of the ring.

March 15, 2012

I’m sorry it has been so long since my last post. But cutting right to the chase, the IL-12 is still working! My scans last month and scans today both show that there’s nothing new, everything is still shrinking, and some tumors are gone completely. Such wonderful news! I knew it would be good news again. I’m lucky enough to be able to feel some of the subcutaneous tumors, so I could tell they were getting smaller. Of course there was the always nerve-wracking possibility that it had spread somewhere only the scans could see, but thankfully that is not the case this time (and I’m sure will continue to be not the case). Both today and last month, I had my scans the same day as my clinic visits so I only had to wait about an hour for my results, which was great. We did not have the usual grueling night of worry between scans and results and for that I am thankful. When it was time for our clinic appointments, both times Dr. Miller came to us right away with the good news. 

As we were about to leave last month, Drs. Rosenberg and Yang entered the clinic and saw us standing at the desk. They had big smiles on their faces and told us not to leave, they wanted to talk to us. So back to the room we went. When we got back to the room, Dr. Rosenberg told us how happy he is that the treatment is working. I know he’s happy for us because he wants the best for us, but of course he’s also happy that his treatment is showing good results. He told us he wanted to take one of the tumors on my back that was easily accessible, and use the lymphocytes in it to grow more TIL just in case we ever need it. He said that he thought it would be a great idea to take cells we already know are working and replicate them “just in case” for the future. They also wanted the chance to look at the tumor to study the activity going on inside. It would be their first chance to see their cells killing a tumor and, therefore, very interesting to them.  So we agreed, of course, and they did the surgery the next day. It was an easy surgery; just a local anesthetic and I was in and out the same day. It was melanoma-related surgery number seven and if my luck continues I am hopeful it may be the last.

We have since found out that new cells are growing strong and rapidly. Today, Dr. Yang said that the cells are no longer expressing IL-12, which is interesting scientifically since they are continuing to fight (and kill) the tumors. So where that all leaves us is that the treatment continues to work, I am on my way to NED, and I have a whole slew of back-up cells that will be waiting in a freezer in case I ever need them. Life is good,  so very very good. I don’t have to go back for scans for two months (May 17^th). While it’s exciting that they are confident enough in the continued success of the treatment that we can extend our time between scans, it does make me nervous to wait that long. I only have one subcutaneous tumor left that I can feel, which is fabulous, but also means that I am going to be very nervous about things going on that I can’t feel/see. But I believe whole-heartedly in my doctors and if they are confident enough to wait, then so I am.

On the show Breaking Bad (which is a very good drama about a high school chemistry teacher turned meth cooker), the main character, who has stage 4 lung cancer, says that when he found out he had cancer he thought, “why me?” And when he found out his treatment was working and he was getting better, he thought, “why me?” This is significant to me on two levels. First, along this journey I have been extremely lucky to meet some of the strongest, bravest, most determined people I have ever met. I have met people who have been through much greater battles than mine and whose smiles outshine all others in the room. And the fact is treatment success is few and far between. Melanoma is a crazy beast who attacks when and where she wants, oblivious to whom she is hurting, blind to the physical and emotional suffering of her captives. She doesn’t care what you want. She is not worried about your nightmares, the constant pit of dread contained in the belly of your family, or if your child will celebrate his high school graduation with both of his parents.  It seems that the difference between who she defeats and who is able to defeat her is almost entirely random.  And in all of the miraculous excitement surrounding how successful my treatment has been, there is a trickle of awe and an ocean of gratitude that I so far seem to be one of the lucky few. Why me? Why is melanoma moving aside to let me cross the bridge from cancer patient to cancer survivor when so many others are fighting just as hard as I and they can hardly see the other side through all of their pain.

I understand the science. Melanoma is a uniquely personal physical experience. Everyone’s body responds differently to it and to each treatment. The physical “why me” I can accept. So it is the metaphysical “why me” that I have to spend the rest of my life answering. I have a responsibility to all of my fellow warriors to take every mind-blowing lesson I am learning on this journey and use it to lead a better life; to be a better person. It has taken me 14 months of existing within arms’ reach of death to finally understand what it means to live. There is no doubt in my mind that I need to, that I have to, find a way to use all of these experiences to help others. I have an overflowing need to make other people’s lives better – to show others just how beautiful life is and just how important it is to be happy. Now that I am getting better, people keep telling me how great it is that I can get back to normal. I appreciate the sentiment, but the thing is there is no longer a normal and I can never go back. Just like you can never go home again and you can’t step in the same river twice, you cannot look death in the face and then pretend you didn’t see it. You can go forward, but you cannot go back. So my new challenge is to figure out who this survivor is and how she is going to live up to all of the amazing gifts she’s been given. If I could do anything I wanted and I never had to worry about paying the mortgage or Kai’s education or regular daily expenses, I would find children without parents and I would love them. Not babies, babies are in high demand. I would love and care for kids who would otherwise be lost in the system. I would create a home for them that is safe, where they could live without worry and fear, where they could grow, where they could soar. I would take these innocent beings who life was already starting to beat down and I would teach them every lesson that cancer has taught me. I would fill their days with happiness, with love, and with hope.  I would show them how amazing they are and I would try my hardest to install in them a self confidence that allowed them to create brilliant futures for themselves. That is how I would like to help the world. That is my dream. What is yours? Think about it, because the first step in making your dreams come true is knowing what they are. I know what mine is; now I have to figure out how to make it happen. One step at a time – all of life one step at a time.

Today I am thankful for the continued success of the IL-12 treatment; I am thankful for my brilliant doctors who I will sincerely miss seeing over the next two months;  I am thankful for the opportunity to meet  some amazing warriors whose battles I have no doubt will end in victory; I am thankful for MMG and all of my amazing co-workers/friends who I will be seeing again starting April 2^nd; I am thankful for the upcoming (May 12th) Melanoma International Foundation’s Safe From the Sun walk and all of the extremely generous people who have donated and who will be joining us at the event  (there is still plenty of time visit - www.safefromthesun.org, Villanova walk, visit a team, team Melanoma Mom - to donate or join the team and participate in the walk); I am thankful for the unceasing love and support of all of our amazing family and friends; I am thankful for the ability to share good news; and with all my heart, I am thankful for my sweet Jeff who is the absolute personification of steadfast support and who has taught me what it means to be a true partner, and our perfect baby Kai. I will give to you every gift that has been given to me, my sweet darling. I will always hold you as tight as you’ll let me, but I will devote my life to teaching you to fly.

January 17

We are winning! In this crazy fight to the death, the score stands at 2 for humanity, 0 for cancer (since the IL-2 treatment and the IL-12 treatment have both yielded responses, I consider both treatments to be wins). We had our standard, very long, series of scans last Wednesday. On Thursday, Dr. Miller gave us the fabulous news that the IL-12 is working. The tumors in my organs are gone. There’s a spot showing on my liver where the tumor was, but it is no longer showing up like a tumor and Dr. Miller believes it is either scar tissue or a kind of hole left by the tumor. And she can’t see the tumor on my pancreas at all. A number of the subcutaneous tumors are also gone, and those that remain have already shrunk significantly. And the best news of all, nothing new has grown anywhere. I knew some of the subcutaneous tumors were shrinking; they are close to the surface and I can feel them from the outside. Going into the appointment Thursday, I was more excited than worried. But I was still anxious because there could be so much going on inside that I can’t feel and it would have devastating to get my hopes up too high and then find out that, yes some of the subcutaneous tumors were shrinking, but more were growing in vital organs. So Jeff and I didn’t tell anyone that we thought it might be working, because we certainly didn’t want to get anyone else’s hopes up only to have any bad news be all the more devastating in that case. But we were right! And we got to hear those sweet, sweet words, “It is working.” Everything we have gone through this past year: all of the worry, all of the pain, all of the sadness; all of the pleading and crying and desperate hoping; all of the physical trauma and sickness and confinement; it was all for something. I’m not sure that I can accurately express that power of that – that it was all for something.  As much as there was hope and positivity during each treatment, there was the fear that it would all be for nothing. This past year is the hardest I have ever worked for anything and the possibility that it could all be for nothing was one of the most frightening and disheartening possibilities I have ever faced. So now we happily wait. We wait until the next scans (February 16^th) and if those scans also do not show disease progression, then we wait again until the next scans and so on until there is no evidence of disease (or until there is evidence of disease progression, in which case we move on to the next treatment, but I don’t think that’s going to happen).

The doctors don’t know why there was a delayed response for the treatment to work. They told us at the last scans that they believed the next scans (the ones we had last week) would show tumor growth and we would schedule surgery to remove one or two tumors from my back to use to grow new TIL cells (since we used the other ones for the IL-12 treatment and the ones taken from my ovary did not grow).  But keeping in mind that I was only the 15^th person to ever undergo this treatment, and the first person to receive it at the dose they used for me, we would not expect them to have all of the answers yet. That is the whole point of the research they are doing – to find answers to these kinds of questions. And I get free, cutting-edge cancer treatment because I am agreeing to help them find answers to these questions. We are not concerned that there are questions they cannot yet answer for us; this is what we expect. How can they have all of the answers for questions regarding an extremely complex, extremely personalized treatment that has only been done 15 times in the entire world? Obviously they cannot. This is true with all clinical trials. Pharmaceutical companies, or in this case the U.S. Government, are willing to give you their treatments for free in exchange for the data they are collecting regarding your health and treatment response. This data helps them fine tune their treatments/medications until they reach the point where they can be approved for distribution to everyone who may need them. And this process, this option to receive treatments in their infant stages, is saving lives. It is saving my life.

I do have my own theory as to why the IL-12 treatment started working. This is just my theory based on what I saw. I am not a doctor or a scientist. I’m just the treatment recipient. To recap the IL-12 treatment: They removed the tumor on my neck and extracted TIL cells (tumor-infiltrating lymphocytes) that they found in it. In the lab, they then replicated these cells by the billions (because these lymphocytes were found attacking a tumor, they theoretically knew how to recognize tumor and it would be of benefit to me if all of my white cells had their ability). They then genetically altered these cells to express IL-12 once they came into contact with tumor. They then killed my existing immune system with chemo and replaced it with these new, super-powerful, tumor-fighting cells that theoretically had the power to both recognize tumor (and therefore naturally want to attack it) plus the ability to express IL-12 within the tumor, which should enhance their fighting ability. That is the treatment; here is where my theory starts. The reason the response was delayed is because the new cells had no call to action. They were ready and able to fight the cancer, but they had no reason to go out and find it. But then I got sick. I got a bad upper respiratory cold/cold-like virus that lasted almost 4 weeks (I still am not entirely over the cough). In the time I had it, I gave it to both Kai and Jeff who cleared it in about 5 days each. During the time I had the cold, I felt the tumors shrinking. I think that the cold was the call to action that elicited the immune response that sent the new cells out to do battle against the cold. And when they went out to fight the virus, they came upon tumor and attacked. We have no way of knowing if this could be true; because I felt the tumors shrinking while I was sick, it’s my best guess.  But it doesn’t matter why it started working. It only matters that it has started working. And I am confident that this treatment will prove to be my cure. I cannot imagine being able to surpass the elation I felt when Dr. Miller told us the IL-12 is working, but I can guess that being told there is no evidence of disease (that I am considered NED) will be like getting a second chance at life. It won’t be “like it” it will be exactly that. And that will be a sweet, sweet day indeed.

The biggest difference between when we thought it wasn’t working and after being told that it is working is the overall decrease in my constant feeling of dread. For the first time in a year, I woke with a smile instead of the feeling of waking into a nightmare.  A large portion of the weight that constantly bears down on my being has been lifted. I feel freer, more in control, more hopeful than I ever have. I am overjoyed, energetic, genuinely happy. And for that I am eternally thankful. But I don’t remember what it felt like before I had cancer. I don’t remember ever being able to gauge something’s importance on anything other than if it meant life or death. I don’t remember not having this constant weight, the nightmares, the fear, or the worry. I feel the same physically as I did before I was diagnosed. Other than losing my hair and the IL-2 nightmares, I don’t have any lasting physical effects from the cancer or the treatments. But I am an entirely different person emotionally. Beating the physical disease is obviously the most difficult and most important. It is what will keep me alive. But once we do that, my journey is not over. To borrow words of Pink Floyd, I think the most difficult aspect will be to make sure I don’t exchange my walk on part in this war for a lead role in a cage. Once we fight our way out of the physical bonds of this cancer, how do we break free emotionally? How can we just let go of all of that darkness so that we can fully enjoy the new light we’ve been given? And, because of my amazing support system and the incredible love of my family and friends, I was lucky enough to be able to stave off a lot of the darkness that threatened. I cannot imagine how someone whose darkness comprises a greater part of his/her journey is able to re-learn, re-join, and re-live.  I think that it is something I will carry with me always, although I am sure it will diminish as times goes by and life goes on. But I don’t want to forget all of it. I was recently talking with my very wise friend, Tania, who was talking about issues going on in her life. In doing so, she quoted the passage on sorrow and joy from The Prophet by Kahlil Gibran. The passage states: “Then a woman said, Speak to us of Joy and Sorrow. And he answered: Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be? The deeper that sorrow carved into your being, the more joy you can contain…When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” This passage is the most truthful expression of this journey that I have ever seen. All of the worry and fear and sadness brought by my diagnosis are direct responses to the prospect of losing everything from which I derive joy. And finding out that the treatment is working, that I might not lose everything after all, is my greatest sorrow unmasked. As much as I have said all along that having cancer doesn’t define me as a person, I’ll tell you something that will: beating cancer. Beating cancer will define me. Because of this journey, I am stronger, more aware, and one million times more thankful than I have ever been. I WANT to carry that with me. I will shout from the rooftops when I am told that I am NED. I will wear it on a T-shirt, I will paint it on my house, I will scream it to the world every chance I get. And as we move on to the next stages of our lives, I welcome the sorrow and the joy, at both extremes, because without them, life isn’t worth living.

Over the past month, the world has lost some of my fellow warriors. My ridiculously strong Aunt Vicki lost her 4-year battle with pancreatic cancer; breast cancer/leukemia claimed our dear co-worker, Laura; and my melanoma sister, Samantha, was taken after 8 difficult years of war. While my recent news is wonderful, they remind me that our fight is not over. They remind me that even in celebration, I cannot take even one minute for granted. They strengthen my resolve to both win my battle, and to use the lessons I’ve learned to be a better person. I carry them, and their warrior spirits, with me as I go forward. They flow with my sorrow and fly with my joy every second of every day. Each person’s battles make us all stronger. Each person’s sorrows remind us all to appreciate what we are given. Each person’s joys give us all more hope. We all want the same things. We all want love and happiness and, when push comes to shove, we will all join hands to fight for it together. This recent victory is not mine alone. It is a victory for every person who ever sent us a positive thought, a healing prayer, a message of strength, a sign of love. This cancer is a mountain we are all climbing together, carrying each other as we tire. And we will stand together at the top, arms raised, victory cries on our lips, knowing that because of sorrow we banded together to create great joy. And for that I could not be more thankful.

Today I am thankful for life. I am thankful for all of my amazing doctors both inside and outside the NCI; I am thankful for clinical trials; I am thankful for every act of support gifted to us during our journey; I am thankful for the ability to share good news; I am thankful for Dana who is leading the Jamie Troil Goldfarb team for the Melanoma International Foundation's 2012 fundraising walk in Villanova, PA, this year we plan to walk too (http://www.safefromthesun.org/ - Villanova walk - visit a team page - Jamie Troil Goldfarb's team); I am thankful for all of our amazing family and friends; and as always, I am thankful for my incredible husband Jeff, my best friend, my partner, and my soul mate, and our perfect baby Kai. Now that you’ve taken your first steps, which you did on your 15-month birthday, may you run wild, with the wind in your hair, knowing that each new day is a gift to cherish, to nourish, and to experience to the fullest. And may you allow me as many kisses per day at 15 years that you do at 15 months.

January 12

It's working. It's working! IT'S WORKING! Nothing new has grown. The tumors in my liver and pancreas are gone. Some of the subcutaneous tumors are gone and the rest have shrunk significantly. I will write more details soon. But tonight is not for thinking of the right words. Tonight is for feeling the love overflow from my heart. Today I am thankful for everything.

December 9

We got the latest results last Thursday. The tumors in my organs are still shrinking and there aren’t any new tumors anywhere. But the subcutaneous tumors are growing slightly, so there is more work to be done. I am going to have scans again January 11^th (results on the 12^th). Then, barring any miraculous tumor shrinkage, I’ll have another surgery to remove one or two tumors on my back so they can harvest them to grow cells for TIL. The cells they harvested from the tumor on my ovary did not grow. Drs. Miller and Yang think it is because they were harvested too soon after having chemo. So we are going to wait another month to get further from my last treatment and then try again with different tumors. Assuming they are able to grow new cells from the tumors on my back, after they grow I will do another TIL treatment. The one at the top of the list right now involves almost the same process as the IL-12 protocol – chemo to kill my existing cells, then receiving the replicated cells as replacement – but instead of the cells themselves being engineered to express IL-12, I will receive 10 doses (one per day) of IL-15 after receipt of the new TIL cells. Like IL-12, IL-15 is theoretically specifically targeted to fight tumor (rather than elicit a whole-body immune response like the IL-2).  The standard “tried and true” TIL method involves receiving chemo, then the new cells, and then IL-2 to stimulate the immune system and “rev up” the new cells. The IL-15 protocol is the same as this therapy, except I will receive IL-15 rather than IL-2 at the end. Dr. Yang said they are seeing fewer side effects with the IL-15 and that they believe it may ultimately replace the IL-2 in the “standard” TIL treatment. So that’s the news and the plan. For now we wait and hope beyond hope that my current cells just need a little more time to fight and will show better results at the January scan. However, as my sweet husband pointed out, either way, I am still better today than when we started this craziness, because the tumors in my organs are shrinking and/or virtually gone and those were the most dangerous to my health. The subcutaneous tumors are not harmful to me physically; Dr. Yang said they could grow exponentially and still not pose a threat. But their continued growth indicates that the melanoma is still active in my bloodstream, and there’s no telling where it will land next. I am okay with these results. I am happy to have a little time to relax, continue to recover from the last treatment and more recent surgery, and go about my daily life with Jeff and Kai. It is a relief knowing that I have at least a month until we do it all over again. The most unfavorable part of the IL-15 protocol is that I will be in the hospital for even longer this time. I will receive the IL-15 for 10 days after I receive the new cells, which means 10 more days of being in the hospital away from Kai. And although I am happy with the plan in place, that part of it makes me want to throw myself on the floor and have a good ole temper tantrum scream-cry-and-kick fest. Fingers crossed for a holiday miracle. I’m still holding out hope for a fresh start in 2012.

There is a clinic on the third floor of the Clinical Center where we go to meet with my doctors for outpatient appointments, including when we receive scan results. In the waiting room of the clinic, the TV always plays the Game Show Network. I don’t know who decided this but I have to give them credit because it is the most perfect channel for those of us waiting for important news; news that could indicate life or death. A soap opera is not compelling unless you are a regular watcher, a daytime talk show is too self-helpy for the moment, and the news just adds an extra layer of anxiety to the already tense situation. But a game show is perfect. It’s relatable to personal experience (I am anxiously waiting to find out if I’m winning or losing) and it’s completely frivolous (which is exactly what my mind needs to stop it from thinking deeper, mainly made-up thoughts).  When we were waiting this past Thursday, the show Deal or No Deal was playing. The premise of this show, in a nutshell, is that the contestant randomly picks numbered cases from a group of super models, hoping to win a lot of money based on the numerical cash value listed inside each case. You start with a case and hope that it contains a large amount, and by guessing the other random cases, you get a better picture of your odds of winning with your case. That’s it. There’s no strategy, there’s no challenge. You randomly guess numbers and hope you get lucky.  This is what my treatment options feel like.  My treatment options are hidden in the cases, my doctors are the super models (which is not to belittle them in anyway but purely for use in this metaphor, although Drs. Miller, Hessman, Stewart, Phan, and Rossati are all gorgeous), and my hope and determination comprise my starting case. I feel like I am randomly choosing cases and hoping I am lucky enough for the treatment inside to work.  There’s no way of knowing beforehand what my chances are. Sure there are statistics regarding response rates, but these statistics are difficult to interpret and apply across a wide range of patients (age, severity of disease, previous treatments, etc.). But melanoma, like many cancers, is a very personal disease – what works for one person may not work for another.  Even though I am confident in my treatment plan, and I have educated myself as much as possible about the options, when it comes down to it, I am just guessing and hoping for luck.

On all game shows, there is a manufactured heightened expression of anxiety. They create intense drama over meaningless situations to keep the viewers interested in the game. If you take the anxiety you feel when Ryan Seacrest cuts to commercial before reveling who is safe on American Idol, and you magnify that by one million percent, that is the anxiety that lives between getting the scans and finding out the results. During this time, the results exist; someone knows them and that someone is not I, and that is an incredibly maddening feeling. There are a lot of important, potentially life-altering results for which we have to wait - getting into a certain school, doing well on a test, landing a fabulous new job, buying a home, finding out if you are pregnant. Waiting is difficult for everyone.  It’s difficult to eat and sleep, your heart races, your mind wanders, your stomach is all tied in knots.  But if you are disappointed when you finally find out the results, you feel badly but you accept it and do something else instead. Regardless of how much you may want something and how seriously you think your world will fall apart if you don’t get the results you want, you still get to live. For 24 hours, approximately every 4 weeks, we are waiting to find out if my life is going to be longer or shorter.  During the waiting time, the answer exists and we don’t know what it is; somebody knows if I am going to live or die and we just have to wait for them to tell us. That time is, hands down, the most mind-numbingly stressful time I have ever experienced. If I combine everything I’ve ever wanted in my entire 34 years of life-including all of the hope, joy, stress, and anxiety that goes with it-it would comprise a single rose in the thousand acre garden of desire I have for my doctors to tell me that a treatment is working and I have my life. There is nothing else in this void, there is only the waiting. There are no ideas, no creativity, no making of plans, no decisions of any kind – just a constant, whole-body plead for good news. I could have never imagined the intensity of this waiting before going through it myself. From this lesson, I will forever feel and express my utmost empathy for people I know who are stuck in their own life-altering waiting times. And if you happen to be there now, stay strong, I am sending blankets of love to provide comfort during each decade-long minute until you find out that you too will live indeed.

But now we are past all of that for this round and I’m happy in this time of being free at home with Jeff and Kai. It’s fabulous to have this time alone with Kai, knowing we can do things like attend playgroups and story times and our plans won’t be interrupted by treatments for at least a month and hopefully more. Kai update: he is adorable, hilarious, brilliant, and all around perfect. He is almost 14 months old now and is about to take off walking on his own any day now. He’s a super chatterbox and his vocabulary grows every day, as does his ability to communicate accurately through body language. It’s so exciting to hear/see what he has to say. Of course I love everything about him, but I think the most intriguing part of his personality so far is his sense of humor. He is hilarious on purpose. He understands why things are funny and can translate that across funny actions. He loves to perform, loves attention, and loves to be acknowledged with laughter. It is really exciting to watch his personality grow; watch him discover and learn and then react. Regardless of what he chooses to do in life, I firmly believe that he will make those around him genuinely happy. And for that I am thankful.

The most difficult thing to see in the Clinical Center is children, who are there for treatment, and their parents. As a patient, it breaks my heart to know part of the fear and pain their little bodies will undergo during their treatments. As a parent, my heart breaks for the mothers and fathers of these little ones, who have to sit back and watch their children be in pain and have a constant worry, fear, and dread about each outcome. When I pass other adult patients, we smile at each other in an acknowledgement of sister- and brother-hood. But when I pass a family, the pain comes in a heavy, dark ball right from my stomach, to my heart, to a cascade of tears. There is a place on the NIH campus called the Children’s Inn at NIH. It is a non-profit institution that lives on the NIH campus. The Children’s Inn provides long-term lodging to families whose children are undergoing treatment at the Clinical Center. Parents and siblings can stay in the Inn (which is right across the street from the Clinical Center), and the child-patients can also stay there at the discretion of their doctors. It is a beautiful, cozy, warm, happy, family-friendly Inn that does everything it can to alleviate stress and provide a homey environment to families who are experiencing intense amounts of worry and pain. I know this is a time of year when people often consider making charitable donations and are looking for deserving institutions. If you are, you can learn more about the Children’s Inn at www.childrensinn.org.  I do not usually use this space to ask for help or promote causes. But there is nothing more worthy of support than the health and happiness of children. Being thankful for the health of our own children and families is something most of us reflect on during the holidays. This year, please say a prayer (whatever that means to you) for the children and the families whose hearts are begging for mercy and who genuinely need a holiday miracle; children whose Christmas lists are addressed to their doctors rather than to Santa Clause this year. May you get everything you wish for, my tiny warriors, next year will be better for us all.

Today I am thankful for the vast amount of time our families have given out of their own lives this year to stay with us and support our every need; I am thankful for the continued overwhelming love and support of our beautiful friends, both old and new; I am thankful for the thoughtfulness and generosity of old friends who are going out of their way to come back into my life and offer support; I am thankful for visits, texts, e-mails, and calls reminding us how much we are loved; I am thankful for our latest results and that nothing new has grown; I am thankful for the marriage of June and Peter, an amazing woman and a man who deserves her; I am thankful for the marriage of two other friends who will remain nameless but who know who they are; I am thankful for holiday miracles, wishes, and dreams everywhere; and, as always, I am thankful for my amazing husband Jeff who could not possibly be a better husband and father even if he tried – Kai gets his perfection from you my love, and for our perfect baby Kai. Our greatest gift to you this holiday is the love that flows in waves from every pore in our bodies to cover you and hold you every second of every day. And your greatest gift to us is your smile and the knowing twinkle in your eyes. You are loved, my sweet baby, you are love.

Ode to Laura, a co-worker, friend, and sister warrior who graced every life event with a limerick and a voice from the angels:

Your life is a beautiful song

A tune both graceful and strong
Now we sing for your solace
As you have for all of us
Through love your light will shine on

November 10

I know it has been over a month since my last post. I am sorry for the silence. Since my last update, we had our first-month scans to check the progress of the IL-12 treatment. We got mixed results. The good news is that the tumor in my pancreas is gone and the tumor in my liver is still shrinking. The not-so-great news is that the subcutaneous tumors were growing. It’s still early though and the doctors aren’t sure how long the IL-12 takes to work since it is such a new treatment, so we are giving it more time. There was one tumor, however, that was growing at a much faster rate than the others and was located in an area (between my lower bowel and right ovary) where it could begin to cause me pain and/or bowel trouble. Also, because of its size, Drs. Phan and Miller believe it would be a good tumor from which to harvest more TIL cells in case we need to do another treatment. So they decided to remove it. We couldn’t tell from the scans if it were attached to my ovary or was hanging out in the mesentery adjacent to my intestine. If it were attached to my ovary, they would take out both the tumor and the ovary. If it were in the mesentery, they would need to resect a small section of the bowel in addition to the tumor.  Fingers were all crossed for the ovary, because a bowel resection would yield a much longer recovery time. Thankfully, it turns out it was attached to my ovary – it was also the size of a baseball. Drs. Phan and Hong did the surgery, and Dr. Hong told us that they were so happy about the location of the tumor and ease of the surgery that they high-fived over me on the operating table. And I believe they did.  I was in the hospital for a week, and although the surgery was the best we could have hoped for and was done expertly, I was in a lot of pain which is just starting to subside (with the help of a steady course of morphine). I have about a 10-inch incision down my abdomen, starting just above my belly button. Dr. Phan told Jeff that Dr. Hong did the stitches and spent a good amount of extra time making sure they would be pretty for me. And I believe he did. They immediately sent the tumor to the lab, and preliminary reports indicate that the white cells are very active and that it will yield a good TIL harvest. So all in all, we are very happy with the procedure and the outcome, and I was very thankful to have Drs. Phan and Hong as my surgeons because both have been with me from the start and I know they are invested in my cure (as are all of the doctors, but there is a comfort in having been in their care for so long).

Because the results of the IL-12 treatment so far are mixed, we need to think about what our next course of action will be if future scans show the tumors are still growing (but on a side note, we know that one of them is shrinking, because at my clinic visit we could all feel it from the outside of my skin and they were planning to remove it during the surgery, but when they tried to find it before the surgery they could not, so I had a CT scans that showed the tumor has shrunk by 50 percent). We have numerous options, which is great but also confusing. We have options within NCI for which I am still eligible, as well as options outside of NCI – both approved and in clinical trial form. After we had the scan and received the results, and of course consulted my NCI doctors, we enlisted the help of others including my medical oncologist, Dr. Thambi, our good friend and former UPenn melanoma specialist, Dr. Guerry, and a specialist at Mass General in Boston, Dr. Flaherty. Trying to decide what to do next isn’t easy. It is very stressful, because the key is to do everything in the right order, ensuring that side effects from one treatment don’t cause me to be ineligible for another treatment. For example, there is an approved drug called ipilimumab (marketed as Yervoy) that I could chose to try next. Like, IL-2, it is an infusion meant to stimulate the body’s immune system to attack the cancer (however, it is given on an out-patient basis and the overall side effects are nowhere near as horrible). My understanding is that it has about a 5 to 6 percent cure rate, similar to IL-2. The problem is that it carries about a 10 percent chance of causing a side effect that would force me to take steroids for the rest of my life. Long-term steroid use would exclude me from any further treatment at NCI. The other approved treatment we are considering is a BRAF inhibitor. Some people’s tumors exhibit a mutation called BRAF (mine do). A BRAF inhibitor is a pill that inhibits the BRAF mutation in tumor cells, which can cause them to die (that is a very basic description, but is my best simplistic understanding). It has shown great response in trials and has been recently approved by the FDA. The drawback is that clinical trials have shown it to slow or stop cancer progression for an average of 6 months. Obviously this is not what I’m looking for overall – I am looking for 50 years. But it is a good option to consider. In addition to taking the approved ipilimumab and BRAF inhibitor, there are also numerous clinical trials testing these drugs with other things to see if they are more effective. So with all of these options to consider, and so much on the line with the results (my life), it is a very difficult decision. 

It is right and it is good for us to gather all of this information now and make sure we are always armed with at least an outline of a plan for next steps, but I am not yet willing to give up on the IL-12. It was a very complex and targeted treatment and I really believe that it just needs some time to work.  The harmful tumors (in my pancreas and liver) are gone and shrinking. The subcutaneous tumors, other than being indicative that the melanoma is still active, are not harmful to me physically. And with the largest tumor gone now from the surgery, I am not in physical danger from the others. This treatment (the IL-12) is a new treatment. They are still realizing results in other patients. They have seen great success that has taken more time than expected. I believe that is the case with me. Now that the big tumor is gone, the cells can focus on the smaller tumors and continue to attack and destroy. So I’m not giving up yet, these fighter cells are still working hard for me, I know they are. My next scans are November 30^th, so we will know more then.

So those are the facts – so far the results of the IL-12 are mixed, we are educating ourselves about next steps just in case, and I just came home from a major surgery to remove a tumor and my ovary.  But those are not the reasons for my blog silence. The truth is that I have not felt like being inspired. I have not felt like being thankful. The IL-12 treatment was difficult from which to recover. It made me very weak and I would say I was only about 80 percent better when I went in for surgery, which has pushed me down much further.  I am tired, I don’t feel well, I am frustrated, and I am trapped. After the IL-2, I was afraid to leave my cancer bubble of comfort. I was afraid to go back to work and rejoin normal life because I didn’t want to break the solace and luxury of being allowed to deal with the cancer as a single life event, with full force and dedication. But now, this bubble has changed from a fluffy warm blanket to a cold steel cage.  I am trapped inside of this cancer, just as it is trapped inside of me. It has become impossible to keep a steady course of positivity when my physical being is beat down, allowed to crawl back up, and then beat down again. Every time I think I am ready to start doing “normal” things, like signing up for a weekly music class with Kai, or committing to plans further than 2 weeks in the future, the cancer rises up again and reminds me that I am not in control of my life anymore.  I want out of this cage. And I am too tired to fight. I am usually someone who plows through life, accomplishing tasks and getting things done. I don’t require a lot of down time and I hardly ever ask for help. And all of that is gone. I can’t even take care of my child by myself. Right now, I can’t even lift him up or carry him around. I am physically worthless and I have become a burden.  I am all but confined to my house (and the Clinical Center) and I am isolated from society. What started as a devastating, but somewhat exciting, dramatic life occurrence that we were going to deal with, overcome, and be all the better for it for the rest of our lives, has become my daily existence.  I have not felt well in over a year. I have not lost hope that we will win in the end, it is just that I am exhausted from the fight. But I realize that I am still in control. I realize that I have the power to take a rest, and come back swinging with full force. So here I am, I am finding my voice once again and I am screaming with an anger that may explode my tumors on its own. Get out of my life! I am stronger than you! You can hurt me temporarily, but I will always come back! Killing you is my single mission and I am not in the business of failing – ever.  I will yell my anger at your existence, and I will sing for the beauty of all that is not you, and I will talk and dream of a time when you are gone. You will silence me no longer, because I have seen that when you lose your voice, your soul is soon to follow. I hereby remove the tape from my lips and unbind my hands. So screw you cancer, I can yell louder than you, because you may live in my body, but I live in the big wide world. And that world is beautiful; it is wondrous; it is where everyone I love lives; so I’m going to stay here a while and there’s nothing you can do about it.

 Baby Kai tuned one on October 13^th. I cannot believe how quickly his first year of life flew by. It has been amazing to watch the transition from a completely helpless creature who knows absolutely nothing outside of basic instinct, to a person with knowledge and understanding and opinions. He is an absolute joy. When I came home from the hospital on Monday, after being gone almost a week, and my mother-in-law brought him downstairs from his nap, he saw me and his eyes grew wide, his smile almost broke his face, and he yelped “YAY!” in delight. When she put him in my arms he wrapped his little arms around my neck and gave me a hug full of love and pure joy. He kept leaning back to look at my face, give a huge smile and shake of delight, and then hug me once again. He even gave me two baby kisses on my cheeks. I will never forget this greeting. While the love I have for my friends and my family creates a never-ending river of hope on which I will float to my cure, it is my sweet Jeff, with our perfect baby Kai on his lap, who are steering my ship of perseverance.  It is Kai’s delighted smile, and Kai’s joyful eyes, and Kai’s innocent perfect love, that shine brighter than any darkness and will always lead me home.

Today I am thankful for today. I am thankful that the surgery went so well, that the tumor will yield a good TIL harvest, and that I have the kind of doctors who high-five each over the operating table; I am thankful for the many expert opinions helping to guide our next steps; I am thankful for the beauty of fall, the smell of which will forever remind of new starts no matter how far removed from school I grow; I am thankful for the continued support of our wonderful MMG family; I am thankful for our amazing friends and utterly devoted family, who stay with us, helping us exist on a daily basis, for weeks, and weeks at a time; and as always I am thankful for my wonderful, loving, awe-inspiring husband Jeff, who rides this roller coaster right beside me with his arm wrapped tight around my shoulder, staring ahead with determination as I burry my face in his side, and our perfect baby Kai. There is no way I can repay your love, my sweetness, but I promise you that no matter how dark I feel inside, I will have only smiles and light for you, and I will do my best to forever shine brightness on your path just as you do on mine.

"But I will hold on hope

And I won't let you choke

On the noose around your neck.

And I'll find strength in pain

And I will change my ways

I'll know my name as it's called again."

             Mumford & Sons, The Cave

September 26

I am home, sweet home. Yesterday my white blood cell count was over 5,000, and since all of my blood work is looking good, and I am not having too many side effects, they are letting me stay at home and go back each day for labs and monitoring. It is one of the many perks of being local. I am still technically an in-patient and am just out on pass when I’m at home, because I will have to go back to stay if anything does happen. So I still have my room, which makes it really convenient when I go back in for labs each day – I just go back to my same room and tell the nurses I am there. They let me go , so last yesterday afternoon, so last night was my first sleep in my own bed in what seems like a really long time. Yesterday and Saturday, I had a completely debilitating headache, unlike anything I’ve ever experienced, but it is better today and now I am mainly just very, very tired. I haven’t yet gotten the high fever that they are still expecting, but who knows, maybe I won’t get it. They said it usually happens between day 8 and day 14 after receiving the new cells. This coming Thursday will be day 14, we shall see what happens. The fatigue is overwhelming; there’s not a lot I can do other than lay on the couch or the floor (or, of course, the bed, but I’m trying to at least stay downstairs where I can see Kai, even if I can’t take care of him or play with him as usual).  I am so thankful for our parents who have been doing just about everything for us as we get through this treatment. Jeff’s parents left on Saturday, and my mom and step-dad took over. Thank goodness for parents; I can’t imagine how we would ever be able to do this without them. While I’m not a mind reader, and as perfect as he is Kai does not yet wax philosophical, but I have to believe that allowing Kai to stick to his normal routine, at home, with his grandparents is making a world of difference for him during all of this chaos. And for that, I am thankful.

So that is my update. Nothing too exciting is happening right now. We will be going back and forth to the Clinical Center every day until my doctors are confident that I am stable. And if I experience any additional side effects, I will have to go back to stay until they pass. But for now, I am happily exhausted at home with my family, confident that my new super cells are flying around killing tumors, while the rest of my body recovers from the harshness of this treatment (that is not a criticism, it is just a fact, I am thankful for the extremes my doctors are going to to cure me and I am thankful to my body for taking it all like a champ). As I said previously, it is difficult for me to be still and rest, so I guess I am grateful that my body isn’t giving me much of a choice right now, even though my mind would like it to hurry up and recover. Although I guess that’s always the case – the mind would always like to move more quickly than possible. And patience is one of the most important lessons I am learning on this journey.

Tonight I put baby Kai to bed for the first time in weeks. He was asleep in my arms before he even finished his bottle, with his sweet little body all warm and cuddly against me. I continued to hold and rock him for longer than I should, but sleep books be damned, I miss my baby. We rocked in silence, at the end of his song, with his head resting gently on my shoulder, his arms wrapped tightly around my neck, and my arms clinging just as tightly to his warm little body. These days my tears flow more freely, but tonight as they fell they did not fall from sadness or worry or fear. They feel from an overwhelming sense of relief and gratitude that we are through the worst of this treatment, and that I am once again given the privilege of holding my baby close as he drifts off to sleep, secure in knowing that I will be here for him when he awakes. With his little chest pressed against mine, our hearts beat together to the rhythm of unconditional love, and our breath flowed in and out in perfect synchronicity as I inhaled his innocent perfection to expedite my cure.  And for that, I am thankful.

Today I am thankful for rocking chairs everywhere; I am thankful for my continued care by my fabulous doctors and nurses; I am thankful for the constant cards, e-mails, phone calls, and text messages from all of the amazing people who continue to support us; I am thankful for our wonderful MMG family and the bi-weekly, much-need and much-appreciated dinners they provide; I am thankful for my mom and Bill who have taken over our and baby Kai’s daily care; I am thankful for all of our amazing friends and family; and, as always, I am thankful for my sweet sweet Jeff whose natural loving actions remind me every second that we are true partners in this journey, and our perfect baby Kai. Every hour of pain is worth just one second of your embrace. I would gladly endure these treatments a hundred times over, for the privilege of one extra minute with you in my arms.

September 22

Everything has been going very smoothly so far. I am severely neutrapenic, but the only thing I really feel from that is fatigue. On Sunday, Drs. Phan, Miller, and Rosenberg came into my room, all with huge smiles on their faces. They said that I was doing wonderfully and that I could go home for a few hours each day to see Kai! So Sunday, Monday, and Tuesday I spent about 5 hours at home with my baby. But on Tuesday, just about when it was time to come back, I crashed with fatigue. I was so tired I couldn’t even move for a few minutes. I’m not good at the in-between time, the time where I’m not totally incapacitated but I’m also not normal. I always try to over-extend myself during those times. Mainly because I’m stubborn, but also because when I am home I want Kai to see me acting normally. He doesn’t seem to be bothered by my new hair (or lack thereof) or that I have to wear a mask. His smiles are as big as ever and he shows me all of his new tricks – like high-fiving, crawling everywhere, feeding himself with a spoon, and imitating others’ actions. Yesterday I couldn’t go home because I needed blood transfusions, so Jeff and his parents brought Kai in to see me.  Of course he was a big hit with the doctors and nurses. It’s so great to get daily Kai snuggles; I’m sure it’s making my new cells work extra hard.

So the last few days have been pretty busy. I am on one antibiotic given IV every 6 hours, and another given IV every 12 hours, which they just changed today to every 8 hours. I had been leaving for home as soon as my noon-ish antibiotic was finished and getting back around 5:30 to start the 6:00 dose, but now the timing will be different (not as much time between medications) and I may not make it home as often. I didn’t get to go home today because one of the side effects I am having is horrible pain in my teeth. They think it is most likely from the neupogen shots they give me each day to boost my white blood cells. It works through stimulation of bone marrow and can cause bone pain, so for some reason I’m experiencing that pain my teeth. But to rule out infection or abscess, I had dental x-rays and an exam (all clear). Over the past couple of days I have had five blood transfusions: three sets of platelets and two sets of red blood cells. Before the first set of platelets I was very hesitant. The idea of someone else’s matter in my person was a bit disconcerting. Also I was afraid that my new cells might not like this other person’s platelets and it would somehow interfere with the efficacy of the treatment. But Dr. Hessman spoke with me at length and assured me that would not be the case. She said my new cells would not even notice the platelets, because by now the new cells should be traveling through tissue looking for tumors and aren’t worried about what is going on in my bloodstream. So I got over my hesitation and did what was best for my body. That was Tuesday evening. On Wednesday, Dr. Phan told me I needed another set of platelets and two units of red blood cells. Between all of that and all of the antibiotics, I was basically hooked up to the IV all day, which is why Kai came to me instead of me going to him (also I was exhausted). There are some things I can taste when given through the IV. I can always taste the saline they use to flush my line and I can always taste the benedryl. I could also taste the red blood cells.  It was a very odd sensation. It was like the back of my throat was bleeding (but it wasn’t painful, more of a warm waterfall sensation), and knowing that it was someone else’s blood made it even stranger. But after getting the blood, I felt much less tired, so it was definitely a good thing. Today I received another set of platelets. Both Dr. Miller and Dr. Hessman have said that almost everyone who gets the chemo regime that I did requires blood products at least once, and that the amount I am getting is totally normal. I get medicines and vital sign readings all through the night, but my night nurses and I have a great system going where they put me to sleep with benedryl and ativan around 10:00, then I don’t even wake up when they hang my 12:00am antibiotics or take vital signs, then I do all of my morning blood draws and vital signs around 4:30am, and then they put me right back to sleep and I wake up naturally around 8:00, just about in time to see all of my doctors on their morning rounds. It’s a good system and I have some amazingly stealthy night nurses. While I have a relatively high tolerance for pain, don’t mess with my sleep. So my nighttime healing goddesses are particularly important, and for their wonderfulnesss, I am very thankful.

I am just starting to lose my hair. I noticed it today in the shower and now on my pillow. It’s not too noticeable yet, but will be soon. Earlier in the week, I asked Dr. Miller when she thought I would lose it and she said Thursday, so she was spot on.  I might also start experiencing some side-effects from the IL-12 once my cell counts come back up (because until then I don’t have an immune system to respond to anything), including a high fever, which Dr. Miller anticipates might happen this weekend. Dr. Phan said it will probably be about 5 more days until my counts start to come up and they have to be over 1,000 for 3 days in a row (after hovering around 0.03 for a few days, they are up to 0.3 today) before I can stay at home (and just come back each day for blood draws and monitoring).

While I am so happy to get to go home and spend time with Kai, it leaves me exhausted and with almost no energy by the time I get back. The lack of posts these past days are for that reason only; the extreme fatigue. Everything is going very well and the doctors seem very pleased so far. Of course, they can’t tell if anything is working yet, but all of my lab values and vital sign readings have been perfect, so that’s what makes them happy. Dr. Miller said that it will be my second-month scan that will really be important in terms of gauging the success of the treatment. She said it can take a while for the tumors to die and for the cells to be reabsorbed into my body. The second-month scan will be in November, so I am still sure that I will be cancer free before the end of this year.

Our fabulous MMG family delivers meals to our home every Monday and Thursday. On Monday, I happened to be home when our friend/co-workers, Shani, came to deliver our meal. She also brought me a book of crossword puzzles and a card. On the card is written one of the most fittingly inspirational messages I have ever seen. It is not attributed to anyone, so I’m not sure who should get the credit for writing this, but I want to share it because, while it certainly hits home for me, I am sure it will also for many others as they stand strong while their own winds blow. My melanoma wind is making me stronger than I’ve ever been, and for that I am thankful.

A mighty wind blew night and day.

It stole the oak tree’s leaves away,

Then snapped its boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around.

The weary wind gave up and spoke,

“How can you still be standing, Oak?”

The oak tree said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the earth,

Growing stronger since my birth.

You’ll never touch them, for you see,

They are the deepest part of me.

Until today, I wasn’t sure

Of just how much I could endure.

But now I’ve found, with thanks to you, I’m stronger than I ever knew.”

Today I am thankful for my wind; I am thankful that everything is going so well; I am thankful for the ability to see my baby as much as possible; I am thankful for my fabulous healing goddesses who amaze me every day with their caring and support; I am thankful for a visit from my mom and Bill  on Monday and from Renee today; I am thankful for everything Jeff’s parents are doing for us while they stay with us to care for Kai and so much more; I am thankful for the continue support of our MMG family and all of the wonderful dinners they are providing; I am thankful for our fabulous family and friends who support us every minute of every day; and, as always, I am thankful for my wonderful Jeff who must be exhausted going back and forth multiple times each day in addition to caring for me and working, you deserve a vacation my love, and for my perfect baby Kai. You are my roots, the deepest part of me, and for you I can endure anything.