Monday, January 31, 2011

January 31

So far in this journey, I have been given a truly amazing gift – the gift of other people’s stories. I have found that since I am sharing my story, so many people have been sharing their stories with me. Good friends, acquaintances, coworkers, and even strangers have all been sharing amazing stories of perseverance, success, and miraculous recovery. I am learning that when you dig deep enough, there is something new and exciting to be found out about almost everyone. People I interact with on a daily basis and thought I knew well have been sharing stories about friends, family members, and themselves; stories that show great strength and triumph; stories that I never would have known if it weren’t for this experience.  It has made me realize how much deeper my friendships can be.  It has made be realize how blind I can be to other people’s true selves and how I only see what I choose to see or what I think I need to see. It has made be realize how so many people have so many layers inside of them. I am learning that when you open yourself to others, others do the same for you. And really getting a glimpse into another human’s soul is the most heart-warming, spirit-lifting, eye-opening gift I have ever received. I realize that I don’t really try to find out more about people than what they offer – I generally take what they offer and consider that to be all there is. But I am learning that is not at all true. I think we are all afraid to share too much, to let others in too far. But I have to say that when you do, you will be happily surprised with the response you receive. The amount of love and support that is pouring out of my friends and family continues to overwhelm me. I am so thankful for all of the stories I have been told and for all of the amazing story tellers. From now on, I will be more open in my life and I will actively seek the truth in others.

Today I spoke with a woman who was diagnosed with stage IV melanoma 10 years ago. She was pregnant when she was diagnosed and started treatment soon after giving birth. When she started treatment, she had 26 tumors in her lungs, spinal tumors, and a large tumor in her liver. By the time she was finished she had had spinal surgery, a tumor in her ovaries and breast, half of her right lung removed, and 40 percent of her liver removed.  She had been through radiation, chemotherapy, a vaccine study, IL-2, and two different versions of the TIL treatment. Two years after she started, she was told she was completely cancer free.  That was 2003.  She remains cancer free today, 8 years later. Her story has given me the most hope yet. We are so similar – both from this area, both new moms, both more worried about the effect this journey is having on our babies than it is on ourselves. She told me that when she was diagnosed, she was angry. She was angry that she had just been given this beautiful baby boy only to be given cancer at the same time. I am angry too. It just doesn’t seem fair. But at the same time, I think maybe it is balance. I have been given so much: a wonderful husband, a beautiful baby, and true happiness.  Now there needs to be a balance and this journey is the universe’s way of evening the scales. Except maybe the universe didn’t plan so well, because this journey is turning out to be an enriching, love-filled, meaningful experience that will only serve to increase my already overflowing happiness. I got this, universe, consider us even.

Tonight I went on a date with my husband. We went out to dinner at a restaurant near our house. We had martinis and appetizers – our favorite dinner before getting pregnant. We tried to talk about other things, but conversation kept returning to cancer. It was nostalgic and hopeful all at once. Nostalgic because it reminded me of so many fun dinners when it was just the two of us and hopeful that we could go out to dinner and have fun again. But it was also a little bit sad. We were making sure that we got in a fun dinner before starting treatment. And I don’t know when we’ll be able to do it again. Not knowing what is going to happen is really scary. I have no idea what the rest of my life is going to be like. I don’t know what this week will be like.  I don’t know what this month will be like.  And I certainly don’t know what this year will be like. And after that, well…after that…I am fighting with everything I have for after that. Thursday feels like the beginning of the unknown. I have no personal plans past Wednesday, at all. If I’m being honest, I am a control freak. Perhaps now I am learning how to let that go. The near future is entirely out of my control. I will deal with it and I will get through it.  And then each and every day will be a gift; a gift that I unwrap each morning and hug tight each night. And I hope that I will openly embrace the unknown, because I am learning that there are so many hidden surprises to be found when you can just take a deep breath and let it all go.

Today I am thankful for the gift of getting to know my friends; the willingness of others to share with me; the existence of hope; and, as always, my wonderful husband and perfect baby Kai. I promise to know you and all of your many layers.  I promise to share myself with you. I promise to teach you to be open to all of the amazing experiences life has to offer you. I promise to be here for you this week, this month, this year, and after that.

Saturday, January 29, 2011

January 29

Between now and Thursday, there’s nothing to do but wait.  I’m anxious and not anxious to get started. I don’t want to rush the time right now where I’m feeling great, enjoying being with my husband and baby, and spending time with my family. But I am anxious to have this be behind me and get on with regular living. Although saying that is funny because how do you go back to normal from here? I’m interested to find out. Maybe it’s just a different kind of normal - a normal with a whole new appreciation for how wonderful normal is. I will appreciate it. When we were waiting to find out the results of the first liver biopsy, where I was convinced the pregnancy was to blame for a false positive on the PET scan, Jeff and I spent a lot of time (in between worrying) promising that we would never take anything in our lives for granted ever again. It was like one day the universe saw we were getting lazy, slapped us across the face, and said “HEY! Look at all of the wonderful things you have in life – perfect love, a fabulous baby, amazing family and friends, an awesome house, great jobs, and your health. And you sit around all day just taking it all for granted and complaining about meaningless things like traffic and the weather, so now I’m going to take one of those wonderful things away to make you realize how lucky you are.”  And do you know what?  It worked.  I have never felt so lucky in my entire life. I have never fully appreciated all that I have, not until I’ve been faced with the possibility of losing it. They say you don’t know what you have until it’s gone. It may be a cliché, but it’s true. It’s so very true. And it doesn’t even have to be gone, just the possibility of things changing made me realize what I have. I have everything I could ever want in life. I am truly happy. I am honored by the love that surrounds me. And I will remember that each and every single day.
I’ve spent a decent amount of time in hospitals because I’ve had asthma since I was 3 years old, and more recently with the melanoma surgeries and giving birth to baby Kai. I think of them as places of healing, places that you go to feel better. This time is going to be the opposite experience.  I’m going to feel great when I enter and get sick while I’m there. I will come out feeling worse than when I went it. Ultimately the treatment will make me better (it will, it will, it will), but to do that it first has to make me sick. So if I am the fighter and the IL-2 is my trainer, it’s a little bit like taking orders from the crazy masochistic Russian from Rocky IV.  While of course I’m not looking forward to feeling awful, I am confident that I am in good hands and that numerous highly-trained professionals will be watching over and caring for me.  And for that I could not be more thankful.
One of the wonderful things about this experience is how much time I’m getting to spend with family. My mom has been staying with us for weeks to help with the baby, my dad and step-mom are here now and will be again in two weekends, Jeff’s parents are coming on Thursday to stay for a couple of weeks, my uncle and cousin are coming next Monday, and my cousin and family are coming for a week at the end of February. I’ve been talking with aunts and uncles, cousins, sisters, nieces, nephews, and good friends much more than usual. And I am now back in touch with childhood friends with whom I’ve lost touch but still love just the same as I did when we were younger. It’s really a fabulous gift and makes me wonder why do we put off visiting, or even just speaking with, people we love? We always say we don’t have time, or now isn’t a good time, or we’ll certainly have to do it sometime soon. But we do have time, now is the perfect time, and there is no time sooner than now. Even if you are the healthiest person alive, there’s still not enough time in life to waste.  I have learned that the absolute most important part of my life is the people who fill it. Without my family and friends, I have nothing worth living for, there is no point in fighting.  I don’t worry now about all of the things I might leave.  I am not going to miss my car or my clothes or my TV. None of my furniture sits with me in the hospital or visits/writes/calls me to offer support and encouragement. So I vow, from now on, to always have time for others and to be extremely grateful for every second of that time.
Today I am thankful for my wonderful family; renewed and strengthened friendships; and, as always my absolutely perfect husband and sweet, sweet baby.  I treasure this journey because it has made me realize just how much I love you.

Friday, January 28, 2011

January 28

I’m home! What a wonderful place to be.  I washed the hospital off of me and snuggled my baby for hours.  Now I have 5 whole days at home until I go back for the IL-2 treatment. I will treasure every minute of it. Once I start the IL-2 (Friday morning), I am going to feel terrible until after I recover from the second round (about a month).  So from now until Thursday, when I go back to the Clinical Center, is going to be the best I feel for some time. If I were a runner I would go out and run as far as I possibly could, knowing it might be the last time I would be able to do so for a while. But since I’m not a runner, I’ll probably eat ice cream and watch cable. I came home to a stack of cards and inspirational letters of support.  The force field of love protecting me grows stronger every day.
The procedure I had on my liver to obtain core samples of the tumor was a breeze. I was awake and it didn’t hurt a bit. It was a little sore afterwards, but nothing to complain about.  Dr. Schaub assured me that they got a good amount of the tumor and he is hopeful they’ll be able to grow the new cells. I am thankful now that we didn’t go through with the full liver surgery. I have no recovery from this.  I can hold and lift my baby.  I am in no pain. Perhaps the universe intervened at the last minute, sparing me the ordeal of major surgery because it knew the cells could be grown this way instead. For that I am thankful.
The nurses at the Clinical Center are phenomenal. They are so kind and caring. I had pictures of baby Kai taped around my bed and different nurses kept coming in to see them.  Also, nurses I hadn’t met came into my room just to say hello because they had seen the picture of me and Kai that I had left with Dr. Schaub at our first meeting at NCI. I had asked him to show it to the other doctors when they were meeting to make their decision regarding my acceptance into the TIL trial. Not only did the other doctors see it, but so did the care team on the whole unit. I’m not sure if I can explain the gratitude and warmth I feel each time someone tells me that they recognize me from my picture, or when someone I have never spoken to asks me about my baby. And it’s not just the people working my unit. It’s people all over the Clinical Center (for example, the anesthesiologist I met with before they decided not to do the liver surgery, and the research nurse who gave me the informed consent to sign).  I’m sure they show the same level of kindness and concern to all of the patients, but the fact that everyone seems to know me and baby gives me a sense of soaring hope. It makes me believe that I have a whole hospital working towards my cure. I know they care about me as a person. I am not just a patient, or a research subject.  To them I am a new mother who needs their help.  And I do need their help.  My life depends on it. 
Yesterday we received the excellent news that my original tumor tested positive for the BRAF mutation.  This is terrific news because it opens up the ability to obtain BRAF-specific treatment that is showing very promising results. The more options the better.  The more chances I get, the greater the chance for success. These treatments are also in clinical trials right now, but one may be approved within the next few months.  I feel very fortunate that I have so many options.  I am just getting started on this journey and the fact that there are so many potential paths to success to choose from give me the strength to take each new step.  I am so very thankful for that.
Being in a clinical trial is a win-win situation, in my opinion.  Not only do I get access to cutting-edge treatment, but I also get to help further medical knowledge to help inform new treatment options for other people with melanoma. When you are involved in a clinical trial, your treatment is free (not just at NCI, but everywhere). Because of this, many people think that clinical trial participants are all in financial need and without other options. They liken being in a trial to being a guinea pig on whom experimental treatments are tested. They think participants are taken advantage of and exploited. This could not be further from the truth. Jeff and I both have good jobs and we have excellent health insurance. It doesn’t matter what financial resources you have, if a treatment is not yet approved by the FDA, then you can’t get it unless you join a clinical trial. Trials are not conducted frivolously. It costs millions and millions of dollars to create new medications and treatments. Without clinical trial participants, no new medications could be developed. Research for complicated diseases like cancer is always evolving, always growing, always advancing. To gain access to the most current knowledge, you need to join a clinical trial. Clinical trials find cures. Clinical trials save lives. Clinical trials will save my life. If not this one, then the next one, and if not the next one, then the one after that. I will keep trying until I have won.
Even though I am anxious to start throwing punches and beating this cancer down, I am nervous about going through the IL-2 treatment. The side effects listed on the informed consent ranged from fatigue to one person having to have her arm amputated. Of course they are required to list everything that has ever happened, but still, there’s no way of knowing how my body will react. No matter what, I will not be feeling well and I will be missing my baby terribly.  But I will remember every second that the worse I feel the harder I am fighting. I will welcome pain and discomfort because I will know there is a war raging inside me and find comfort in the fact that it is the treatment making me feel sick, not the cancer. As much as I appreciate being there, it is scary for me on the unit.  The other patients I have seen are extremely ill. When I see them, I see what I could be like. It is easy for me to be positive and thankful now when I am healthy and strong. I worry that there may be a point where hope may not come so easily. But that is worthless speculation, because soon I will be cured. 
I couldn’t post yesterday because I didn’t have a password for internet access. I didn’t push for it because I knew I would be home today.  I feel badly asking for things not directly related to my cure while I’m at the Clinical Center.  Everyone is working so hard for me already, and working equally as hard to save the lives of all of the patients.  But when I am in for the week next week, I will make sure I have access.  Jeff bought a Web camera so I’ll be able to watch baby Kai all day and all night.  We’re also going to take all of the good advice and Skype as much as possible.  Seeing my sweet baby, my wonderful husband at my side, and the genuine care of the doctors and nurses will get me through next week’s treatment - no matter how difficult it turns out to be. Bring it, I am ready!
Today I am thankful for being home with my baby; all of the cards and letters that were waiting for me; the enormous care package from Jean; the neighbors shoveling for us again; the news of my BRAF status; my amazing Wilson friends who have created a team for the Melanoma walk at Villanova in April; my fabulous MMG family who are wearing melanoma bracelets while I am gone; the continuous daily calls and texts of love and support; and, as always, my best friend and husband Jeff and my prefect baby Kai. I am sorry I can’t be here every day like you are used to, little one, but I will make it up to you over the years to come. You are my reason, you are my fight.  I will not let you down.

Wednesday, January 26, 2011

January 26

Well, there's been a change in plans. After we got here and were admitted, the surgeons told us that they reviewed the CT scan further and decided that attempting to remove the tumor surgically was too risky.  It is between two major blood vessels and there is a chance that they would have to remove half of my liver to remove the tumor sucessfully. They determined that the risk was not worth the potential benefit. Instead they will remove some of the tumor through needle biopsies (performed by a radiologist, using CT as a guide - I'm guesing it's similar to the biopsy I had previously).  They will then try to grow the new cells from what they collect.  Because they won't be removing as much of the tumor as they would through surgery, there is a lesser chance that the new cells will grow.  While we are waiting for the new cells to grow, they are going to give me one course of IL-2.  Basically IL-2 hyperactivates your immune system, which will hopefully stimulate an immune response to the melanoma.  It's an in-patient therapy and I will be here for a week, then home for a week, then back for another week. IL-2 by itself has about a 15% response rate and a 5% cure rate.  There is a chance that my body will respond to it and the tumors will shrink or disapear without us needing to do anything else.  In the meantime, they will try to grow the new cells from the biopsied tumor. If I respond to the IL-2, then  we won't do the TIL therapy. If I don't respond to the IL-2, and the new cells grow sucessfully, then we will do the TIL therapy as planned.  If I don't respond to the IL-2 and they can't grow the new cells, then we are back to the drawing board.  I will be here until Friday for the biopsy, so my immediate time away from Kai has been shortened to really only one full day (since I saw him this morning and will see him again on Friday). I have to come back on Wednesday for the first round with IL-2.

When they first told me about the change in plans I was really upset. All I heard them saying was that we weren't going to be able to do the procedure that would give us the best chance for growing the new cells. I wasn't worried about the risks of the liver surgery, because I was focused on fighting the cancer at all costs. While Dr. Phan was tellling us about the change in treatment, I had a moment where I lost all hope.  Everything had been going so smoothly for the past week (I can't believe it's only been one week) and this change threw everything off course. But now I realize that it's actually a really good change for a number of reasons. First of all, I won't have the 6 weeks where I can't lift Kai - fabulous. Secondly, I'll be in much less pain (actually no pain) after the procedure compared to what I would have experienced with the full surgery.  And thirdly, instead of just sitting around at home waiting while they try to grow the cells, we will be trying something else in the meantime; something with a 5% cure rate.  The IL-2 treatment won't be easy.  The goal is to make me as sick as possible to cause my immune system to go into overdrive. But I won't lose my hair since it's not a chemotherapy, so that's good news (I will lose it if we end up doing the TIL treatment, because the TIL treatment involves chemotherpay to kill my immune system before transfering the new cells, but it will be worth it of course). So the new plan is that I will be here until Friday.  Then I will come back on Wednesday and be here for just over a week.  Then I will go home for 7-10 days, and then come back for another week. After the second round, I will have more scans to determin if I am responding to the IL-2 (a response would be if my tumors shrink). If so, I'll repeate the IL-2 treatment again and then have more scans to see if the tumors have decreased even further. I'm excited for the change in plans. I am happy to be doing something during the period where we are waiting to see if the cells will grow.  I am anxious to fight dirty and I want to do as much as possible as quickly as possible.

I am extremely impressed with the speed and apparent smoothness with which the doctors were able to change course. When I was admitted at 1:00, we were still on track for the full liver surgery. When they came to talk to me about the change it was around 3:00.  By just after 4:30, Dr. Schaub had scheduled the biopsy for tomorrow and we had a plan for me to come back to start IL-2 on Wednesday. I don't think this would have been able to happen at a private hospital. Because of the fanastic resources at NCI, they were quickly able to help me change course and stay on track with treatment; ensuring I was still acting as quickly and as aggressively as possible. I am very thankful for that. While I would consider myself relatively easy-going, I'm not sure how naturally flexibility comes to me.  I think I'm going to have to learn to be a lot more flexible during the course of this journey.  I am thankful for that lesson.

The Clinical Center is different from a private hospital in other ways as well. For example, I am not confined to my unit.  I am free to walk around the building as I please. As a patient, I really appreciate this freedom. I can sit downstairs in the lobby amongst people, or walk the halls, or go to the cafateria if I'd like. Otherwise, I would be trapped in bed feeling sorry for myself. This freedom makes me feel more like a person who is being treated than like a patient. I don't know if it's because I'm part of research or if it's because the Clinical Center, being a government entity, is not tied by some of the same legal fears and restrictions as is a private hospital. Whatever the reason, I am thankful for it as both a patient and a person.

I haven't had any major insights today. It's been exhausting emotionally with the change in course. I will say that being on the oncology in-patient unit makes me very happy for how heathly I am. There are some very sick people here. People who are here because it's their last chance for hope. I am thankful I am not one of those people. If this treatment doesn't work for me I am confident that something else will.  I have a fabulous team of doctors in NCI and outside NCI who are working very hard to help me. Dr. Schaub and I are the same age. He is 8 days older than I am. We live in the same area and we both work in clinical trials. In another life we could have been friends. I feel like he cares about us as people. I feel like he understands how anxious we are about both the baby and going at this as aggressively as possible. I feel like everyone here cares about us as people. My nurse has a 16-week old baby girl. She is around my age and lives in DC. We too could have been friends. At this point I feel like I have more in common with my caregivers than I do with the other patients. And with the speed with which we are attacking this disease, I am very hopeful that I will always feel that way.

Each time I read the heart-felt, thoughtful words written by someone who has taken the time to read my post or who is reaching out to me another way, I feel an extra boost of confidence and an assurance that everything will turn out perfectly in the end. I continue to be overwhelmed by the level of support and the vast amount of love we are being given. This experience is teaching me to never take a friendship for granted. When you are at a point in life where you are forced to focus on only the most important aspects, they turn out to be family and friends, period. I am literally fighting for my life. Knowing that so many wonderful people have my back gives me the strength not only to continue, but to do so with hope, with laughter, and with love. I am very thankful for that.

Today I am thankful for the very thoughtful and generous care package from the Trembles, Christians, and Reids; our neighbors shoveling our driveway this morning; my doctors continuing to keep my best interests at heart and changing course when needed instead of giving up on me; the continued support of our amazing family and friends; my mom for taking care of Kai while we are at the hospital; and, as always, my husband - the most wonderful man in the whole world - and our precious baby Kai. I miss you both terribly. But tomorrow I will be one step closer to victory.

Tuesday, January 25, 2011

January 25

The Clinical Center at NIH is beautiful.  It’s an enormous, spotless, bright, and cheerful building right on the NIH campus. When you walk in, the lobby is a large open space with towering ceilings.  Today a piano concert was held during lunchtime. It doesn’t feel like a hospital. It feels like a place you might want to work.  When I am in the Clinical Center, I don’t feel like a patient, I feel like a person who is helping to further important research. I feel like we are working together for the same cause – to find a cure for cancer.  To cure me.  Say what you will about government bureaucracy and red tape, both times we have been there have been the most impressively efficient medical experiences I’ve ever had. The tests run like clockwork, each department functions as one unit, and the people who work there recognize that you are a person with a serious medical need (or else you wouldn’t be there).  So far, it’s a really great experience.  I’m thankful to be part of such exciting research and I’m so very thankful to have the opportunity to receive this treatment.
We were at the Clinical Center for most of the day today.  First I had to get a CT scan of the area between my neck and my waist to allow the surgeons to more accurately access the difficulty of removing the tumor. The CT scan can see tumors more clearly than a PET scan, and can also detect tumors smaller than can be detected by a PET scan. The fabulous news is that the CT scan didn’t pick up any additional tumors.  My abdomen and lungs are clear.  It only detected the tumors in my liver and pancreas that we already know exist. The not-as-good news is that they’ve determined that they cannot do the surgery laparoscopicly because of where the tumor is located.  It’s not a huge deal, just means a slightly more difficult recovery.  We also learned that I need to be admitted tomorrow for the surgery on Thursday, so the rest of the day was a bit of a rush getting things together and tying up last-minute stuff at home (since I’ll be in the hospital for around 6 days, depending on recovery).  After getting the CT scan, we met with Dr. Schaub and Dr. Phan again and they briefly went over the details of the surgery. We then met with Dr. Hughes, my surgeon, who explained the procedure and what to expect in greater detail.  I told Dr. Hughes that I didn’t want to take narcotic pain medication because my system is extremely sensitive to it (makes me nauseous and dizzy). She very honestly and bluntly told me that I was going to be in a great deal of pain afterwards and that we would find some way to manage it (maybe an epidural).  Now, it’s been my experience that most doctors gloss over if something is going to be painful or not.  In my experience, most doctors don’t really mention it at all.  So, I’m not sure if I should be worried that she warned me in advance or if I should take it as a sign of respect.  As a signal that we are a team and she is going to tell it to me like it is.  I’ll choose the latter.  If it’s painful, so be it, this is the easy step afterall. 
We also found out that I cannot lift the baby for 6 weeks after the surgery for fear of hernia.  Six weeks is almost half the amount of time he has existed.  How can I not lift my baby for 6 weeks?? I can hold him and I can carry him, but I can’t lift him (for example, out of his crib or off his play mat). Someone will have to follow me around all day lifting the baby and giving him to me, for 6 weeks.  This seems ridiculous.  He is going to wonder why mommy turned so worthless all of a sudden. It is going to be very difficult to comply.  I know I have to, because the last thing we need is a hernia surgery between the liver surgery and the in-patient portion of the treatment, but it’s going to be very difficult. The other difficult thing is this: I have been worried this whole time about the baby being allowed to visit me in the hospital, but I am ashamed to say that it has never once, until today, occurred to me that the hospital is not the best place for a newborn. I was so focused on the regulations in place to protect me from getting sick during treatment and I completely lost focus on what would be healthiest for the baby. Clearly a newborn should not be hanging out in a hospital.  There are airborne illnesses, antibiotic-resistant airborne illnesses.  The hospital is filled with sick people, very sick people. Not only am I ashamed as a mother for not considering this sooner, I am also completely and utterly devastated about what this means. This means that during my surgery, I will not see my baby for 6 days.  Six days. I have never been away from him for more than a few hours.  The longest was last Friday when we went to Penn for the day, but even then we were home by 3:00.  Being apart from my baby for 6 whole days, 5 whole nights, is heartbreaking. I don’t know how I’m going to do it.  And this is just this time. For the in-patient treatment, it might be 3 weeks that we’re apart.  Three weeks is such a huge amount of time in his early lifetime!  He is not the same baby today that he was 3 weeks ago. He learns and grows every single day.  How can I possibly miss 3 weeks of my baby’s life?  I don’t care what the side-effects of the treatment are, being away from my baby will be the worst by far.  Because he’s the sweetest, most wonderful husband in the world, Jeff immediately bought me an electronic photo frame and filled it with pictures of Kai. I’ll have it next to me every second I’m awake.  I’ll see his disproportionately huge beautiful blue eyes and I’ll stay strong knowing that each day I’m away from him now could mean extra years I get to spend with him later. I just hope he doesn’t think I’ve left him.  He’s so young, too young to understand.  All he will know is that mommy isn’t there.  And that is the most heartbreaking aspect of the journey so far.
When I was getting my CT scan, there was a waiting area where everyone sits and waits after changing into CT-friendly paper pants. In that area was a man in a wheelchair, wearing a hospital gown, hooked up to an IV, who was clearly very sick.  He was probably in his 40s. He had his eyes closed and his head tilted back. Standing behind him was a woman, most likely his wife, with her arms resting on his shoulders, her head bowed towards the ground, and silent tears streaming uncontrollably down her cheeks. She was devastated. This was a man who she clearly loved very deeply and whatever fight he was fight was breaking her.  About 10 feet away from them were two women talking.  They were talking relatively loudly and were laughing and discussing their weekends. They were completely oblivious to the fact that 10 feet away from them one person was dying in body and another was dying in soul. I was called in to get my IV placed, and when I came back the man and the woman were gone. The fact that these two women could be so blind to such obvious human pain right next to them makes me wonder how often I am near someone’s pain and don’t notice.  Most people’s pain and sorrow isn’t as obvious as it was between this man and this woman, but how many times have I picked up on something being not quite right with someone I knew and not asked them about it. We all suffer.  We are all in pain.  All we have is each other. I vow now that I will be more open to recognizing and empathizing with the people around me. I will be there to support others as others so tremendously support me.
I am not scared about the surgery.  I am only scared that they will not be able to grow the new cells. Today, Dr. Phan said that the size of the tumor (between 3 and 4 cm) will be beneficial to the potential success of the new cells. I believe that they will grow.  I believe that the surgery on Thursday will go smoothly, the pain will be tolerable, my baby will not forget me, and the new cells will grow.  My posting tomorrow will be from inside the hospital.  I’m not sure everything that the surgery entails, but I will try to continue to write every day.
Today I am thankful for the depth of support being shown to us by our work family, personally and around work-related logistics; the efficiency of the Clinical Center and the peace of mind that gives me; the doctors who will be involved in removing my tumor (especially the anesthesiologist); my wonderful family and friends; and of course my fabulous husband and perfect baby boy.  I will miss you little one.  I hope you know I am not doing this by choice.

Monday, January 24, 2011

January 24

I cried at Whole Foods today – right in the middle of the produce section.  Not a full-body sob, just a few uncontrollable tears.  I debated whether or not I should say that since my message is positivity.  But I decided to write it because a) it leads to something else I want to say, and b) it’s important to note that being positive is a conscious choice I’m making, not necessarily a natural inclination. I am choosing to focus my emotions on hope and love and thankfulness and I know I’m going to get through this. But that doesn’t mean that sometimes I won’t be sad  or overwhelmed that it’s happening at all. It’s because of all of the wonderful things I have to live for that I am sometimes sad.  I’m okay with that.  It’s the overall positivity on which I focus. Even in times of weakness, my resolve is still strong.  I was standing in the produce section looking around trying to decide what vegetables to buy and I froze. I just froze. I felt like there was a spotlight on me.  I felt like everyone was staring at me and that everyone knew that I was different from them, that I had cancer. I felt like everyone there was so “normal” and I didn’t belong with them. I went through the motions and did the grocery shopping, but the whole time I felt like I was walking around with a huge letter C on my head and that everyone was pitying me.  Of course there’s no way to tell, I haven’t even started treatment yet, and there’s no way anyone would know, but it feels weird now – all–encompassing – like it should be obvious to everyone.  One of the things that the company I work for, MMG, does is write patient-directed information (brochures, fact sheets, letters, etc.) to help people understand clinical trials and their diseases. When we write this information we very deliberately do not define the readers (i.e. the patients) by their disease.  For example, we would say a “person with diabetes” instead of a “diabetic” or “someone suffering from cancer” rather than a “cancer patient.” I knew that this was important to do, but, to be honest, I never really put much importance on it.  I mean if you have diabetes then you’re a diabetic, or if you have cancer and are undergoing treatment then you are a cancer patient, right?  But today I realized on a personal level that when you label people with a disease, then you define them by that disease.  I am a mother, a wife, a daughter, a sister, a friend, a colleague, a neighbor.  I am a proposal director, a home makeover show junkie, a reader, a carbohydrate fanatic, a wine drinker, a University of Pittsburgh alumni, a library card holder, a firm believer in sunblock. And I have cancer.  I am not a cancer patient. Having cancer doesn’t define who I am. It is just the next step on my life journey.  It is my next lesson.  And it will soon be in my past.  But I’ll still be all of those other things.  I will still be me. And maybe, if I’m lucky and if I learn this lesson well, I’ll be an even better me.
I was on the Melanoma Research Foundation Web site today ( and I was reading other people’s stories about their fights against melanoma. One story I read was about a man who also went through the TIL cell trial.  He was first diagnosed with melanoma in 2001 and participated in two trials (a vaccine trial and a trial studying IL-2, which is a cytokine with very harsh side-effects that is also used in the TIL therapy) before joining the TIL trial.  Before he joined, he was given 5 months to live.  That was 5 years ago.  His story was very inspirational. He also said that he lost 35 pounds during the 3-week in-hospital portion of the trial. In a totally demented way that made me really happy.  I mean if I have to have cancer, then I may as well get some help losing the rest of this baby weight, right? Absolutely.
Joining a clinical trial is really the only option for people with stage IV melanoma.  The current treatments that are available to the general public have a success rate of about 15% - only 15% of people who get them respond positively. This isn’t just true for melanoma; it’s true for a lot of cancers, but it’s especially true for melanoma because melanoma is resistant to chemotherapy.  They are still studying how it works and how to stop it. They are finding new breakthroughs each day. Every day, we learn something we didn’t know yesterday. Every day we are closer to finding new options. So any little bit of time you get takes you closer to a new treatment, closer to hope, closer to winning, closer to being a cancer survivor.  Tomorrow we go back to NCI.  I’m anxious to learn more details about the trial and I’m anxious to get started.  I am anxious to kick cancer’s ass.
When we decided to have a baby, I spent a long time deciding on a lullaby for the baby I would soon have.  I wanted something that would motivate him to be true to himself and to not be afraid to experience life. I settled on The River by Garth Brooks. I sang it every day while we were trying to get pregnant, just in case.  I sang it to baby Kai while he was in the womb, and I sing it to him every night while I rock him to sleep. Now the words and the message pertain to me too and I realized tonight while I was singing him to sleep, that if I expected him to live by the song’s message, then I better be sure that I did too.  And after I realized that, I realized how important it is for that to hold true for every single thing I do. So right now, I make a promise to my son, I will live my life the way I want you to live yours.  I will be the kind of person that I want your role model to be.  I will make a conscious effort to show you beauty and love in the world.  I will make sure you smile every day, no matter what fight you are fighting at the time, and I will smile with you every day now.  I will be a better person for you.  I am making a conscious decision to be positive and hopeful and thankful. That is the kind of person I want to be. And if there were ever a time to become the person I would like to be, then that time is now.
Today I am thankful for: being able to go to the grocery store; my mom being back to help with the baby; the continuous stream of love and support being shown to us by our amazing friends; and as always, my insanely wonderful husband and my perfect baby boy.
The River, by Garth Brooks:
You know a dream is like a river
Ever changin' as it flows
And a dreamer's just a vessel
That must follow where it goes
Trying to learn from what's behind you
And never knowing what's in store
Makes each day a constant battle
Just to stay between the shores

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

Too many times we stand aside
And let the waters slip away
'Til what we put off 'til tomorrow
It has now become today
So don't you sit upon the shoreline
And say you're satisfied
Choose to chance the rapids
And dare to dance that tide

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

There's bound to be rough waters
And I know I'll take some falls
With the good Lord as my captain
I can make it through them all

And I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

Sunday, January 23, 2011

January 23

It’s difficult waiting for treatment to begin. I am anxious to start.  I feel like I’m in the starting position of a race just waiting for the gun to go off. My muscles are tense, my stomach is anxious, and I feel a surge of excited adrenalin coursing through me all day long. I am not a patient person by nature, and now that we have a plan it is difficult waiting. I made the mistake of researching melanoma online earlier today; I won’t be doing that again.  I had a moment of weakness (i.e. fear and sadness), but my wonderful husband held me close and reminded me that I am not a statistic; I am a person, I am in control, I am young, I am healthy, and I will survive this (we will survive this together). I can’t use the cliché of what you don’t know can’t hurt you because obviously that’s not true: I had no idea I had cancer and it is clearly hurting me.  But I can say that maybe I only need to know as much as I need to know. I have to think of my fight as a unique occurrence.  While hearing stories of other people’s victories over melanoma and other cancers is extremely encouraging, hearing the other side is so overwhelmingly terrifying. I have to remember to focus on this one day at a time. 

I am lucky that I am not feeling any symptoms from the cancer.  I am thankful for that each day.  It does, however, make knowing that I have cancer extremely surreal. I know it’s real, but at the same time, I can’t quite grasp the enormity of it. It’s like this huge whirling cloud that I can see spinning high above me and I know that it’s the big picture, and I know I’m right in the middle of it, but it feels like it’s outside of me, like it’s not really a part of me. Instead, I’m thinking about the treatment in steps.  As each step passes, I am that much closer to getting my normal life back.  Tuesday I go back to NCI for more scans: A CT scan of my liver that will help inform the surgeons how to best perform the liver surgery. They believe from the images from my PET scan that the tumor is superficial enough that they might be able to do laparoscopic surgery, which would mean a quicker and easier recovery. Then we meet with the surgical team to learn more details about the trial and obtain more in-depth information about the logistics. Thursday is my liver surgery and I’ll be in the hospital for 3-5 days depending on recovery.  So once I get through this week, then the first major step will be finished and I will be that much closer to my inevitable full recovery.

The amount of instantaneous support I’m being given is overwhelming (in a fabulous way) and humbling. I am blown away by the number of people who have contacted me through e-mail, phone, this blog, and on Facebook to show me love and support. I am so lucky to be surrounded by such wonderfully caring people and I can tell you, it makes all the difference. It gives me extra hope and strength to fight this fight. I am so thankful that this has given me the opportunity to reconnect with good friends, strengthen existing friendships, and meet new friends who I otherwise wouldn’t have had the chance to interact with. I am also thankful to be reminded just how precious friendships are. From now on I am going to tell people when I am thinking of them, even if I haven’t talked to them in years. It usually turns out that if you have a friendship you wish you could rekindled, it’s the kind of friendship that doesn’t need much help getting right back to where it used to be. We may fall out of touch with each other due to the business of our daily lives, but we’re all still connected by the fabulous (and sometimes sorrowful) times we’ve shared together. Not only does this onslaught of love and support give me hope for my personal battle, it gives me hope for all of the world’s battles. It never ceases to amaze me how people band together in love when times are tough and the compassion we show each other in times of need. We are good. We are very very good.

I am going to make sure that I am thankful for at least three things each day.  No matter how difficult the treatment gets, I will find at least three things every single day for which I am thankful.  Today I am thankful for: My amazing friends, old and new, who are choosing to share this journey with me; the delicious fresh-baked scones that our friend Missy brought us; my loving family that is being completely supportive and giving me the strength I need; the fact that I have a place to live in this bitter cold weather; and especially for you, Jeff, and you, baby Kai-I love you more than words can say.

I have no idea what role positive thought plays in a person’s health.  I don’t know exactly what power the mind has over the body. But I do know that I never want to look back at this time as time that I wasted being worried or depressed or feeling sorry for myself.  I want to know that I spent each and every day being thankful for my amazing life, my amazing family and friends, my amazing baby boy. Because I am so thankful, so very thankful for it all.  And in the end, this is all that matters.

Saturday, January 22, 2011

The beginning - January 22nd

It’s been 3 days since I found out I have cancer.  Metastatic melanoma (stage IV melanoma) to be exact.  In January of 2007, I had a suspicious mole removed from my leg – the pathology report said melanoma. I had local surgery (a wide resection and a sentinel lymph node biopsy) followed by a clean PET scan.  We thought that was the end of it.  In November 2008, I got an infection in my leg at the surgical site of the first melanoma.  There was a hard ball under my skin and the skin on top was red and hot.  It hurt and I didn’t feel well. I called my surgeon’s office, but they told me that it couldn’t have anything to do with melanoma and to just get it treated by my primary physician.  I took antibiotics and the infection went away. About 4 months later it happened again.  Again I called my surgeon’s office and they told me to get it treated and then come in. When I got to my visit, the surgeon told me there was nothing they could do since I’d already had it treated, so I went home. In November 2009, I got a third infection.  This time I called my medical oncologist (who was following me just as a precaution on the advice of my dermatologist). He forced an appointment for me with my surgeon’s office. This time they decided they would go back in, remove the mass, and determine what it was.  They thought it was probably a stitch left over from the first surgery that was causing the infections. So I had another surgery and they removed the mass. The next day, the surgeon called and told me there was melanoma in the mass.  The following day, I went back in for a second (or really third) surgery where he took a larger area.  The pathology report on the larger area came back clean.  I had had a PET scan before the surgery, which showed activity only in my leg at the same spot as the infection (which turned out to be melanoma).  So they decided not to do another lymph node biopsy.  Those two surgeries were in December 2009.  In January 2010 (the next month), I got pregnant.  We had been trying before the surgeries, so we were delighted.  Of course, that ended any conversations about further treatment – they was nothing I could do until after the baby was born (he was born in October 2010 and he is the most precious, cutest, smartest little baby ever born).

Earlier this month, I had a routine follow-up PET scan since it had been a year since my last surgery. I had an appointment with my oncologist the following week.  The day of my appointment, my plan was to take the baby to daycare for a few hours to get him used to it, because I was supposed to return to work the next week (my maternity leave was ending).  Since the daycare is next to our office (my husband, Jeff, and I work together – that’s where we met), I first took him in to show him off.  When I got there, Jeff told me that my oncologist had called him and told him that he should come to my appointment with me because the PET scan was showing activity. At the appointment, my oncologist – Dr. Paul Thambi, one of the best doctors I have ever had in terms of dealing with patients and showing real caring and concern – told us the scan showed activity in my liver (3 cm), pancreas (2.5 cm), and lymph nodes (just a small amount). He was very honest and told us to expect that it is melanoma, giving us a 90% chance that it was. In preparation of it being melanoma, he proactively set up an appointment for us at NCI for the following week (this past Thursday).  That was Tuesday.  On Friday of that week, I had a liver biopsy. On Monday I had a brain MRI because NCI needed the results for our meeting (the MRI was clear, thank goodness, it has not spread to my brain).  I had a follow-up appointment scheduled with my oncologist for this past Wednesday to learn the results of the biopsy.

The days between the biopsy and finding out the results were utter torture.  One way our lives would remain the same (which is fabulous, we love our life – we have an absolutely perfect little baby, fantastic friends and family, great jobs, we love where we live, I wouldn’t change a thing – I’m happier than I’ve ever been) and the other way everything would change, maybe forever. I spent the entire time convincing myself that the action from the scan was something left over from the pregnancy and birth.  I mean how many PET scans do they see from women who had just given birth.  I decided it couldn’t be very many and that everyone would be so happy when we found out that’s all it was.  I couldn’t believe it could be cancer. I couldn’t have cancer – I have a baby, a newborn baby who needs me.  Finally Wednesday arrived. Dr. Thambi came in the room and we knew right away, the biopsy was positive for melanoma. He was telling us, and I understood what he was saying and I knew what was happening, but part of me just kept thinking, “What? What is he saying to me? I can’t believe what he’s saying to me. This isn’t happening.”  But of course it was happening.
After the appointment, we had to tell our parents. My mom had been staying with us to help with the baby since the previous week when I had the liver biopsy (which was a godsend, we were so thankful for her being there, and I thank her in advance for all the time she will be here in the near future). We called her, told her the news and said we’d be home shortly.  We then called my dad and Jeff’s parents. Hearing that I had cancer was difficult, but having to tell everyone else was even more so. Any pain I feel is because I have cancer; it’s due to me.  But because I have cancer, I am causing pain to others that I love – especially my husband. I am lucky that my baby is way too young to understand and as long as we act “normal” around him, he hopefully won’t be too affected.  I am thankful for that.  I am thankful for so much.

The next day, Thursday, we went to NCI for testing and to meet with the surgical team. I am extremely fortunate that I live only about 15 minutes from NCI. I was able to go immediately unlike some who have to travel, make arrangements, etc. I should also mention that the company we work for, MMG, does patient recruitment for clinical trials and Jeff is the head of our oncology division. Because of our work, we have a firm understanding of clinical trials and the research that NCI is doing (they are one of our clients) and I am so thankful for this knowledge because it allowed us to make a quick and easy decision about our options, without a need to spend time learning about the research and what it means to be involved in a trial.  The trial NCI discussed with us is their TIL cell trial.  It involves cell replacement therapy and they have been doing it for 10 years. The treatment is aggressive and it is harsh, but it is showing promising results with a 50% response rate (meaning people’s tumors either shrink or stop growing 50% of the time, which may not sound that great, but other options are showing 15% response rates, so 50% is huge).  Right now, my understanding of the trial is that it works like this (we meet with them again next week, so I may clarify some of this information after that meeting so stay tuned):  First I go in for liver surgery where they remove the tumor in my liver. They then harvest any white blood cells that are in the tumor (I should back up and say that melanoma is a cancer that your body recognizes as a cancer and tries to fight, so they would expect that my immune system may already being trying to attack the tumors). They replicate these white blood cells by the billions, which takes 4-6 weeks (they do this in their lab while I wait at home).  There is a chance that they won’t be able to grow the new cells.  They said there’s a 20% chance it won’t work.  They should know within 2-3 weeks of starting if the cells are going to grow or not.  Assuming the cells grow successfully, I then go back to the hospital (the Clinical Center at the National Institutes of Health) for about 3 weeks. They first give me high doses of chemotherapy for about a week to kill all of my current white blood cells.  They then give me the new cells, as well as immunotherapy drugs to help them along.  Theoretically the new cells will all be able to recognize melanoma as a foreign substance and will try to attack it.  Since the melanoma has spread to my liver and pancreas, that means it is in my bloodstream.  This treatment attacks the cancer from head to toe, which is the only thing we can do to try to stop it from spreading further.  My understanding is that those 3 weeks are terrible. My body will go through hell.  They said that they keep upping the doses of the drugs until I can’t take it anymore or my kidneys give out, whichever happens first (luckily the side effects are reversible after the treatment ends). It’s an exciting trial and people come from all over the world for the chance to receive this treatment.  We are so fortunate to live so close to such an extraordinary resource – especially with the baby.  Not having to travel with the baby is huge, I am so thankful. Anyway, after our meeting, they said they would all be meeting as a team the next day and would make the decision at that time if I am eligible for the trial.  I left them with a picture of me and my baby.  I asked the doctor, Dr. Schaub, to show it to the other doctors at the meeting.  I wanted them to know what I’d be fighting for.  I wanted them to know that I didn’t care how terrible the treatment would make me feel in the short term – I will do whatever it takes for long-term results.  Dr. Schaub told us that he would call us after the meeting on Friday and tell us their decision.  We also met with Dr. Phan on Thursday, who is also part of the surgical branch at NCI.

While NCI is an incredible resource and the world pioneer of cancer research, they are also, of course, biased to their research (which they should be, that’s not a negative). Because things were moving so quickly, we wanted to get another opinion about treatment.  There are about 3 options for me and the key is getting them in the right order.  We have to make sure that we try them in an order that doesn’t exclude any of them later. Luckily (another thing to be thankful for), my step-father has a good friend who is a melanoma expert from University of Pennsylvania. He has been terrific in talking us through our options and advising on questions to ask and things to look for. He also got us an appointment with Dr. Lynn Schuchter at UPenn.  Yesterday (Friday) we went to Philly for the day to meet with her (I should mention that we live in the DC area – Takoma Park, MD to be exact – so Philly is only about a 1.5 hour train ride for us – again, we are thankful).  She told us about BRAF-specific therapy (BRAF is a mutation that you do or do not have in your melanoma tumor, we are in the process of having my original tumor tested to see if it’s there or not). This treatment has much fewer side effects than the TIL cell treatment.  It’s a pill and is easy on your body. It is showing good success of about a 75% response rate and slows progression for an average of 11 months.  If my tumor status comes back positive for BRAF, I would be eligible for this treatment (which is also currently in clinical trial form). After talking with her in-depth about the pros and cons of doing one treatment before the other, we agreed that it would be acceptable to try the TIL therapy first and the BRAF (if I’m eligible) second.  While the TIL treatment will be much harder to go through, I decided that I wanted to go through the most aggressive treatment first.  Right now I don’t have any symptoms from the cancer.  I am otherwise healthy and strong and realistically this is the strongest I am going to be.  I want to make sure that I go through the harsh treatment now, while my body can handle it the best.  I am worried that if I try something else first and it doesn’t work, and I end up doing the TIL treatment anyway, by that time I won’t be as strong – the cancer will be worse, I will be feeling worse, and I may not be able to tolerate the treatment as well.  I am also afraid that, in that scenario where I try something else and it doesn’t work, I will feel like I wasted that time and I am afraid that there is not time for wasting.

Friday late afternoon, Dr. Schaub called and told us I was accept to the TIL trial and they wanted to begin next week.  SO EXCITED!!!!  We only found out 3 days ago that I have cancer and we already met with the top experts, had a plan for treatment that we were happy with and felt good about, and were getting started so quickly.  I am so thankful that this all feel into place as quickly and as easily as it did.  I am tempted to take that as a sign that the universe is working in my favor and isn’t going to let me down. 

So that’s the story so far, those are the details and the background. I decided to write this blog to document my experience on the TIL trial. We all know that medical research exists, but there is a vast misunderstanding about clinical trials. They get a bad rap.  They are portrayed as using people like guinea pigs.  But that isn’t true.  Medical research is vital to the advancement of disease treatment. Every single drug or therapy or treatment that is currently available, had to first go through clinical trials before being approved for use in the general public.  My hope is that anyone reading this will get a personal, up close look into my experience in a clinical trial at NCI.  Because of this trial, I am confident that I will see my son grow up.  And even more importantly, I am confident that my son will have a mother. I have a 14-week old baby and I have cancer. He only exists because I willed him into being.  I decided I wanted to bring a human into this world and so I did.  In doing that, I made an implicit promise to this little one that I would give him the best I possibly could.  That I would be there for him always. That I would teach him and guide him.  That I would comfort him when he’s sad or sick, and delight with him when he’s joyful.  To fulfill my promise to him, I have to be here.  I am not scared.  I am not sad.  I am prepared to go through hell.  I will fight this and I will win.  I don’t have any other choice.  Every morning it feels like I am waking up into a nightmare, but I open my eyes, look at my wonderful, supportive, absolutely amazing husband beside me, see our perfect little boy, feel the overwhelming love of my family and friends, and I greet the day with a smile.  I am so thankful for everyone in my life.  My family and friends are the most amazing people I know.  I feel like an impenetrable force field of love has been created around me. This force field will protect me.

I love you, Jeff.  You are the most amazing man I have ever known.  Your strength and support have amazed me and I know that you will carry me through this until we come out together on the other side.  I couldn’t do it without you.  Thank you in advance for everything you are going to have to go through for me. I promise to take care of you until we are old and gray.

I love you, mom and dad and Linda and Bill.  I love you, Diane and Don. I am sorry for putting you through this, but don’t be afraid for me.  I am strong.  I will win.

I love you, all of my family and friends. The amount of support you have shown already is amazing.  I am so lucky to have such wonderful people in my life. Each and every one of you is incredible and I am so thankful for you.

I plan to update this blog daily.  We will see what happens together.  My journey is just beginning and while I’m not sure what’s going to happen along the way, I am positive of the final outcome.