Tuesday, January 17, 2012

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 16th) 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 15th 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.

Thursday, January 12, 2012

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.