Monday, August 15, 2011

August 15

Well the results are in and they aren’t exactly what we were hoping for. The good news is that there are no new tumors (and no new growth in the existing tumors) in any organs. The not so great news is that I have ten, new subcutaneous tumors, mainly in my back.  So while it’s great that nothing too dangerous is happening now, the growth of the new tumors indicates that the IL-2 is not working and it’s time to move on to treatment number two.  The next treatment is very similar to the TIL treatment I described previously, but more targeted to my tumors. My tumors express a protein called MAGE (which is relatively rare). So instead of using the cells they harvested from the tumors in my liver and neck, they are going to take white blood cells directly from my blood stream. They will do that this Friday, during a four-hour apheresis process at the Clinical Center.  Then they will take these cells to the lab and genetically alter them (by inserting genes into the cells) to attack MAGE protein.  Once the cells are engineered, I will begin the cell therapy.  I will be in the Clinical Center for 3 to 4 weeks. First, I will get one week of chemotherapy, not to treat the melanoma, but to kill my current immune system. Next, they will give me the new cells. With the new cells, they will give me another round of IL-2 to “jump start” the new cells and send them into attack mode. It’s an exciting treatment. Only four people have done it and all four have done it within the last few months. Let me say that again – only four people have done it. There is no long-term data on the treatment, but three of the four people have responded and one is already completely disease free.  If I do the MAGE study and it doesn’t work, I can still do TIL. So I’m excited to be part of this cutting-edge research. It’s an extremely thoughtful and complex process, and I am in awe of the brilliance that has created it. I am very lucky to be able to part of this treatment and for that I am thankful.

While I am confident that this will be the treatment to cure me, it is going to be horrible to go through. Absolutely the number one most horrible thing is being away from baby Kai for such a long period of time. Jeff is going to bring him in to visit frequently (maybe even daily depending on how sick I become), but that’s not the same as being there when he wakes up in the morning and to put him to bed at night. Three to four weeks in the life of a 10-month old is a very long period of time. He’ll be growing and learning new skills, and I’m sure he will be a different person from the time I go in to the Clinical Center to the time I get home. At least this treatment is once and done, as opposed to the IL-2 where I kept leaving and coming back and leaving and coming back. The second most horrible part will be the physical pain of the treatment. A whole week of chemo and everything that entails (I will lose my hair that week, but that is a small price to pay for my life), and then another round of IL-2. I am most dreading the return of the IL-2 nightmares. I feel like they’ve only just recently stopped and now they’ll start all over again. The other effects of the IL-2 seem to disappear relatively quickly, but for some reason the nightmares linger on and on and on.  Also, the recovery is going to be a lot more difficult than it was after the IL-2. Basically I am getting a white blood cell transplant – that’s about what the treatment boils down to.  And recovery will be a slow process. But I will recover and this will soon be behind us just like the IL-2 is now, and by then I am sure I will be cured.

Getting the news that the IL-2 stopped working was like being diagnosed all over again. Just when I was starting to get back into the swing of my “normal” life – going back to work, managing a regular daily routine, getting back on track socially – BAM!  I wasn’t able to update my blog right away because I needed some time to get myself straight in my mind. It has been a very sad week. I cry every day. I cry for the time I will be away from Kai. I cry for the pain I am about to endure. I cry for the uncertainty of the treatment. I cry for the fear of what will happen. I cry for the pain I am causing my wonderful husband and family. And I cry for the little bit of hope that has been lost now that one entire treatment is crossed off of my list of potential cures. I am scared. I am scared of being sick in the hospital. I am scared of how my family and friends will feel after this treatment, when I really look like I have cancer. I am scared that baby Kai will think I have abandoned him.  I am scared of the nightmares returning.  But sadness is part of this journey too. I’ve been so focused on staying occupied and positive that I haven’t given myself much time to embrace the sadness of the situation.  And it is unquestionably sad.  But it is so much more than that, and for that I am thankful. The solitude we find is that IL-2 wasn’t even in our original plans. We were going to go right to the TIL treatment. So the fact that the IL-2 shrank the tumors in my liver and pancreas is a fabulous added bonus. I think that my body knew that it needed more treatment. So instead of growing dangerous tumors in my organs, it decided to grow these small, not-so-dangerous subcutaneous tumors to let the doctors know that it needed some more help.  And now that the IL-2 has started curing me, the MAGE treatment will sweep in and do the rest of the work, leaving me completely disease free. It’s just going to be a more unpleasant road than hoped to get there.  But get there I will, I have no doubt about that.

My doctors have changed. The Fellows rotated in June, so now my main doctor is Dr. Miller. We met her for the first time at our clinic visit on Thursday and I’ve spoken to her several times on the phone. She is great and I have the utmost confidence in her. It will be strange to be at the Clinical Center without Drs. Schaub, Hong, and Rosati though. I will miss them. Dr. Schaub was there with us when we began our journey at NCI and we built an almost-friendship during my treatment, so I do miss him. But I am confident that I’m in good hands with Dr. Miller and I also really like her as a person. It’s a cool gift that my doctors are my age – it’s like your friends are trying to save your life. There’s an easiness, a familiarity, an absence of formality that makes the whole process more bearable.  And over the Fellows are the extremely capable attending physicians (they rotate more frequently, I have a new one every month; I don’t know who my attending physician will be during the treatment). And over them is the brilliant mind of Dr. Rosenberg who is pioneering all of these treatments; whose life’s work is finding a cure for melanoma.  With a team like this in my corner, there’s no way I can lose.  And this is just the team at NCI. Outside of NCI, I am surrounded by family and good friends and people who know people, who are all rallying for me, supporting us, and doing everything they can to make sure that this journey is more of a gift than a trial (and they are succeeding).

As strange as it may sound, I think it will be a small relief to lose my hair. Right now you would not know that I have cancer by looking at me. And sometimes that’s excellent. Nobody looks at me with pity, no strangers are extra nice to me because I have cancer, the world doesn’t treat me any differently. But it’s also like I’m walking around with this extraordinarily enormous secret about myself. When I meet new people, it feels like I’m lying to them, like I’m pretending to be some way that I’m not (or pretending not to be some way that I am). It’s a huge part of who I am right now and I am not ashamed of it. When I lose my hair during the MAGE treatment, I will wear my baldness proudly.  I am a warrior, my bald head is my war paint, I have many sisters and brothers fighting this fight with me and I am honored to be among such a strong and brave group of people. We bald-heads, and previous bald-heads, and future bald-heads, and bald-heads through love, are waging war and we will all be victorious – some of us in body, and some of us only in mind, but every single one of us in heart.  The chorus of one of the songs on baby Kai’s playlist says “It’s all how you look at it, and how you look at it, is really up to you.” There are people who see the world through rose colored glasses. But warriors see the world through rose, yellow, purple, white, black, orange, blue, green, and florescent pink glasses because this is our mantra, this is our truth.  There is not a lot about this journey that is up to me. All that is up to me is how I look at it, and I am so thankful for all of the amazing beauty I have been allowed to see.  The waves of this journey mixing with the birth and growth of my amazing son have worked together to show me a beauty and a light that I never knew existed, and I will never see life through the same eyes ever again. And for that, I am thankful.

We continue to be overwhelmed by love and support. People do wonderful things for us every day. Two especially amazing things have happened since my last post. First, my junior high school English teacher, Ms. Brok, held a fundraiser for us where she auctioned her farm to host a child’s birthday party. She, and all of the people who donated, went out of their way to thoughtfully and graciously support us; even though I have not seen Ms. Brok in about 20 years and do not know the people who participated in the fundraising. People who do not even know me, came together for our cause. It was extremely thoughtful and generous and we very much appreciate it. As if that were not amazing as is, two 10-year olds “won” the farm for their party. These amazing girls do not know me. Their parents do not know me. And not only did they choose to have their birthday party in response to a fundraiser for my family, but instead of gifts for themselves, they asked their friends to donate money to the Melanoma International Foundation. These extraordinary girls forwent birthday presents to donate $252 to melanoma research. These are the exemplary hearts of our future. I for one have a lot to learn from these two 10-year old girls. I will take this lesson to heart, I will not forget it. My promise to these girls is that I will do at least one nice thing for someone else every single day.  Even if it’s just an extra smile, or holding the door, or letting someone change lanes in front of me, I promise that I will pay this kindness forward every single day. With these two shining lights as my guide, I vow to do what I can to make this an even better world for them.

I feel very strongly about that. Not just about paying forward all of the kindness we’ve received, but about using this experience to do something good.  I’m not exactly sure what that thing is yet – other than in general supporting and loving people more – but there has to be something. This cannot be all for nothing, or if not for nothing it can’t just be all about my life being better. I have to make a reason out of this journey. I have to use all of the lessons I am learning for something real, for something tangible, to do something that will positively affect others. I cannot let these lessons go to waste. I have to use this gift to help.  The world needs so much help and we all have so much to give. When I am finished being a warrior for my own cure, I will be a warrior for something else, I am sure of that.

Baby Kai is 10 months old now.  I can’t believe we’ve been traveling this road for seven months already. He just gets more and more adorable every day. He is now clapping, and waving, and saying “da-da,” and is getting ready to start crawling any day. He has six teeth with two more ready to pop very soon. I don’t know how much he weighs or how tall he is officially, his doctor’s appointment is on Wednesday, but I’m guessing him around 21 pounds. He’s been wearing 12-month clothes for the past month because he’s a tall little sweetie. He sleeps like a dream, 11-12 hours per night (around 6:30pm until 6:00am) and eats almost anything he is offered. We could not be luckier to have such an all-around fantastic little son and we are so thankful every day that he has come to live with us. I do not want to leave him. My heart hurts just thinking about it and knowing I won’t be here to put him to bed each night brings tears to my eyes. But I am thankful that he is so young that there is a good chance that he won’t remember any of this craziness, and I’m hopeful that he only remembers the love and the laughter that we try to give him every minute of every day.

So while I go through this week with a heavy heart, I am still confident in the outcome of this journey. I still know that I will win and our lives will be better for it. But it’s going to be a very difficult few months. I’m not sure if it’s better or worse knowing what the treatment might feel like and having to just wait for it to be time to endure it. Either way, I know that with whatever physical pain I experience, it will be met two-fold with love and support that will overshadow all of the negativity and leave only hope behind. And for that, I am thankful.

Today I am thankful to be part of this research; I am thankful to go back to the loving arms of my healing goddesses at the Clinical Center; I am thankful for the magnitude of expertise that is directly overseeing my care; I am thankful for our wonderful MMG family and all of the smiles and hugs that comprised this Monday; I am thankful for our amazing friends and family who we will have to lean on again; I am thankful for two 10-year old girls who have taught me a lesson in selflessness; and as always, I am thankful for my amazing, devoted husband Jeff who does everything he can to make this as easy as possible on me when his emotional toll is just as great as mine, and our perfect baby Kai. Mommy’s tears are temporary, my love, soon only smiles will remain because I have a secret:  Right now I have cancer, but cancer will never have me.

5 comments:

  1. I relate to so much that you wrote and tears come to my eyes because I have and do experience the same daily emotions and struggles that you do. I might be in "remission" right now, but there isn't a day that goes by that I don't remember how scary this disease is and how easily it can come back and take me. I feel the way you do though-"I might have cancer, but cancer doesn't have me." Your positive attitude and your will to live will keep you here, that I do not doubt! Best of luck, keep me posted.

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  2. You keep that positive spirit going! We were just at the NCI last week on Wednesday as one of the every-three-month follow up scans to the clinical trial that my Stage 3c man undertook beginning in August of 2010. He participated in an apheresis process wherein his cells were extracted and "juiced" and re-injected along with a trial vaccine. (His arm of the trial did not include the IL-2) His reactions were minimal to that process. Some rashing, some welts, and an amazing exhiliration that like you, he is participating in cutting edge research---under Dr. Rosenberg's incredible team) We experienced a team shift in this past trip as well...my husband was with Drs. Schaub and Hughes in the trial last August, and we'd been with Dr. Lanier and occasionally Dr. Yang until this most recent visit. Now, Drs. Shaw and Hughes are our team.

    You stay confident, fight, and know others are buoying you in thoughts prayers and shared similar experience. Our twins were 4 when my man was dx at Stage 2a, 8 when he recurred (then Stage 3c) and now, they will be turning TEN next month and their daddy, the love of my life is currently (and so confident for the long-haul) NED. Hoping when Kai turns 10 we will still be reading your blog and sharing the joys of life continuing the fight (it's a forever fight) CANCER-FREE.

    Love and peace and strength to you, Melanoma Mom.

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  3. Your positive attitude and the love of your family and kai will help you get through this..Itis just another step on your way to getting well and you will. Look how far you have come. The research is cutting edge and thats what you need to beat this beast now. You will get through it!!Its okay to be mad and sad its all part of the process-stay strong for you!
    randi
    randisohnomelanoma.blogspot.com

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  4. I truly wish you the best in the forthcoming cell transfer treatment, especially as I have my own interview and screening at NCI next week to see if I am a viable candidate for ACT (Adoptive Cell Transfer) there. My melanoma came out of nowhere from a small mole that appeared in January, and was diagnosed in March. I've since gone from Stage III-A to B to C, and now most recently to Stage IV-A (having had my melanoma metastasized to lymph nodes in other areas). What a roller coaster ride.

    Your positive attitude throughout your ordeal has been a real inspiration to me, and I am so with you on trying to practice random (or not so random) acts of kindness, and spread love and good will. Not always easy when you feel terrible.

    Keep spreading the love, and accepting it.

    Melanoma Warrior Jake

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  5. You're such an amazing writer, Jamie. Know that we're in your corner, always. You got this, sister - cancer should have asked someone...

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