September 14

Today was a very exciting day. First, we took a tour of the lab where they grew my cells and even got to see my cells under the microscope. I told them we were ready for them and that I promised to fight right alongside with them. Although the science is greatly above me, it is really an amazing orchestration of cell generation and manipulation. The people in the lab have been working with my cells for months (considering they began with the original harvest from the liver biopsy and then created brand new cells from the tumor on my neck). They know my name and our story. It was really humbling to have the chance to meet them in person and see where all of the magic happens. And now my cells are sleeping peacefully, dreaming victorious dreams, and preparing to fight to the death tomorrow. I love you little cells, you are my salvation.  And for that, I am thankful.

The second exciting thing we did today was get our heads shaved.  That’s right, I said our heads. My dear, sweet, wonderful Jeff shaved his head as an act of love and solidarity. He said, “This is our cancer and this is our baldness.” If you know him, I’m sure you are not surprised; he is one of the most (the absolute most in my opinion) caring, loving, generous, loyal men you’ll ever meet. I cannot believe that I am so lucky as to be his wife. I promise you, my love, I will fight with everything I have and I will win this battle. And after I do, I will devote the rest of our long lives to ensuring you are happy and you are loved every second of every day. And for now, we will wear our baldness proudly and beautifully together. It is our badge and our shield, and it will soon be our winning trophy, for there is no doubt that this is our fight.

Other than those two fantastically exciting events, this day was uneventful. I didn’t receive any treatment today because it was the rest between the last dose of chemo (yesterday) and receiving the new cells (tomorrow). I’m feeling tired and sometimes nauseous, but otherwise great and ready to kick some cancer butt tomorrow. Tomorrow is when it all begins. Tomorrow is the first day of my cure. Dr. Yang, one of the attending physicians, told us that a woman who recently participated in this study is almost completely disease free after just one month. Just one month. That will be me too, but without the “almost.” I think that by Christmas the cancer will be gone. We will greet 2012 with overflowing gratitude, full of love, and with renewed energy to fight for others using all of the strength we gained fighting for ourselves.  It’s going to be a glorious year, of that I am sure.

Today I am thankful for my new warrior cells who are going to rush in fighting and finish this chaos; I am thankful for the brilliant scientists and doctors who created my new cells and this treatment; I am thankful for my loving healing goddesses who make each day here a joy; I am thankful for Leah and Christine who shaved our heads with dignity and made us beautiful and proud; I am thankful for the continued support of our amazing family and friends; and, as always, I am thankful more than words can say for my sweet, sweet Jeff and our perfect baby Kai. If you grow up to be half the man your father is, sweet baby, you will be quite a man indeed.

September 13

The past few days have been a whirlwind of going back and forth between the Clinical Center and home.  Because of the toxicity of the cytoxin, I had to be on prophylactic IV bladder medication for 48 hours (and had to continue to pee every 2 hours until the medication finished). That finished at 7:00pm on Sunday and then I could go home to sleep, which was fabulous. I got to snuggle baby Kai and sleep in my own bed. I then came back to the Clinical Center on Monday late morning to receive the fludarabine and a few hours after that I could go home again for a few hours. I then came back last night to sleep because my last dose of fludarabine was at 5:00am this morning (with labs and premeds starting around 4:00am). The plan was that I would be able to go home afterwards and stay there until tomorrow evening. But plans have changed because my cell counts have started to go down (which is what they want them to do – my white blood cells need to be at zero before I get my new cells) and baby Kai has a cold. It was too risky to be home with him while he is sick and I have a decreased (on its way to zero) immune system. So here I am, back at the Clinical Center for the duration of treatment.  The good news is that the chemo is finished. It wasn’t something I would choose to do for fun, but it wasn’t as terrible as I expected. I am tired and nauseous, but otherwise doing well.  I haven’t lost my hair yet. Dr. Miller told me it will happen all at once, in one fell swoop, rather than gradually, so I’ll probably get it shaved tomorrow or Thursday so it’s less dramatic when it does happen. Tomorrow we are going to the TIL lab to visit my new cells and give them a pep talk. It will be really exciting to see the amazing facility and people who created them and to get to see them before they comprise me. I’m not sure what I’m going to say to my cells yet; I think I have to meet them first. That’s about all the news from here. I will get my new cells on Thursday around noon. In the meantime, I will just hang out here, not catching any colds. With fabulous nurses to talk to, Jeff to watch movies with, and an unending amount of side-effect medications at my disposal, it’s comfortable here and we make the best of it.

I brought some things from home to decorate my room. Mainly pictures of Kai to tape to the walls, but also pictures of Jeff and Kai in frames; a sign made and signed by everyone at MMG from last time I was getting treatment; a beautiful picture my friend/co-worker, Angelica, made me for my birthday, which reads “Girl meets boy. They fall in love. Get married. Have a perfect baby boy. Watch him get big. Grow old together. Very very old;” and pictures drawn by my cousins, Max and Grace. One of the pictures drawn by Max has my name on it across the top and the word “love” down the side. However, my name is written backwards. I’m not sure if Max is infinitely wiser than any 7-year old should be or if the backwards writing was not entirely on purpose, but either way, it’s correct. That’s what I am right now. I am Jamie backwards. And my doctors are going to turn me right-side-up and inside-out to cure me. So maybe even by Christmas, dear Max, I will be Jamie the right-way-across again. But it is taking me a lot of lessons in flexibility to get from backwards to forwards. And when I am not feeling well and I look at this picture, I remember, oh that’s right, I’m just backwards right now, but still there is love. And for that I am thankful.

Today I am thankful for the wisdom of my doctors making me stay here rather than risk catching Kai’s cold (as much as I would rather be snuggling him tight instead); I am thankful for the wonderful care he is getting from his grandparents; I am thankful for a wonderful dinner from Karen; I am thankful for the continued support of our incredible MMG family; I am thankful for our amazing family and friends; and, as always, I am thankful for my sweet sweet Jeff who carries so much of this stress and deserves so much more than I can give him right now, and our perfect baby Kai. Happy 11-month birthday little one. Next month we will be celebrating your first year, which has been the happiest year of my life.

September 10

Today has not been as horrible as I expected. I am nauseaus and very tired, and I have to pee every two hours (they come and wake me up to do it) which adds to the tiredness.  But overall, no where near the awfulness of IL-2 and for that I am thankful. Nothing much happened today. I had my first dose of cytoxin last night at 6:45pm and my last dose just ended now and that is it for the cytoxin, thankfully. The day basically comprised getting medications for nausea and sleeping and peeing, repeat cycle. And poor Jeff has been sitting by my side the whole time. Although it wasn't as bad as I expected, I still feel very sick, but just wanted to write a quick update for today.

Today I am thankful for love. I love you my sweet Jeff.

September 9

Once more into the breach, dear friends, once more. Here we are, at the Clinical Center again, just a few hours to go until treatment begins. I arrived yesterday.  I had to stay overnight last night to be hydrated. Now we are all clear and the pharmacy will soon be notified to mix the chemotherapy. In just a few hours I will willingly, purposefully, and hopefully inject poison directly into my blood stream with the sole purpose of killing part of myself. My chemo regimen comprises two drugs, cyclophosphamide and fludarabine. Cyclophosphamide is given today and tomorrow. Fludarabine will be given for 5 days starting today. The doctors and nurses tell us that the cyclophosphamide is extremely toxic and can be difficult to handle (which is magnified by the enormous doses they will give me to make me neutrapenic so quickly), but that the fludarabine is much easier on the system. My understanding is that the cyclophosphamide kills my blood cells and fludarabine kills my bone marrow. I have a one-day break between the last dose of fludarabine and receiving my new, improved cells, and then 10 to 20 days until my cell counts return to an acceptable level. It feels like we are about to embark on an epic journey.  I have no idea what to expect other than I won’t feel well and then I’ll be cured. I am scared of the pain. I am hopeful that this will be my cure. I am thankful for this incredible treatment. And regardless of which emotion rules at any given time, I cannot go back, so therefore I go ever forward toward my cure. Smiles and tears mix together to create a serum of hope.  And the knowledge that I am about to receive such an amazing treatment at such an amazing place soothes my worries and quells the worst of my fears.

Because if its toxicity, I have to stay in the Clinical Center while receiving the cyclophosphamide and for 24 hours after the last dose.  I also have to pee every 2 hours around the clock while I’m here because it is possible for “waste” chemo to accumulate in my bladder and cause it to shut down forever (possible, but extremely unlikely). Doesn’t sound like fun – being sick and having to get up every 2 hours, but I have a baby and I am used to sleep deprivation so I’m sure I’ll get through it just fine (and either way, I have no choice so I will sleep soundly after I am victorious).  So, whatever, it’s only 3 days and I have endured more than that through the IL-2 treatment. Because the fludarabine is well-tolerated, I will most likely be able to go home to stay during the remaining 3 days before I get my new cells, which is fabulous because I’ll be with Kai. I’ll have to come back every day to receive the fludarabine and be monitored, but I can sleep at home with my husband and my baby. I have no idea how long I’ll be here after I receive the cells, but hopefully I’ll be able to go back and forth from here and home at some point during recovery. Dr. Miller said I will lose my hair around the same time I receive my new cells and she will shave my head then. I’m okay with losing my hair. It’s become thin and gross anyway, so now I get a re-do and hopefully it will come back better than ever. My mother-in-law and her friend made me a cache of beautiful head scarves, and a good friend from work lent me some from her recent victory over breast cancer. I also bought a wig for special occasions, which is straight (rather than my normally curly hair) and I’m somewhat excited to have “hair” I can brush (my curly-haired sisters know what I mean by that I am sure). So that’s what I know and that’s all that I know. I feel like I’m about to jump off of a cliff into a void that is swarming with possibilities. I will try my best to let the pain whoosh past quickly as I fall directly into the rest of my long, glorious life.

The doctors just came to see me and tell me that we will soon get started. Dr. Rosenberg said, “We have terrific cells for you.” And they all admired the 13 pictures of baby Kai that are hung across my wall where I can see them from my bed.  I know they are doing everything they can to cure me. I know they have a personal stake in my cure. I know that I am in the best possible hands.  So I embrace the pain with one look at Kai’s smiling face, and I look forward to being made of superhero cells.

We recently had the privilege of meeting a fellow Melanoma Warrior (in fact that is what the T-shirt he was wearing said) and his fabulous family a couple of weeks ago. He, Jake, was coming to NCI to screen for a study and has since been accept into the TIL study, which he will probably be starting just as I am finishing (you can read his story at www.jakestake.tv/). Jake and his family (his wife, son, and daughter) came to our house for dinner while they were here and we had a great time getting to know them and their journey. Like me, I have no doubt that Jake will be cured and that this is just a mind-opening bump in the road for him too. While we were eating, Jake asked me if I speak with many others with melanoma, and I told him that I don’t really, especially in the beginning, but that I’m starting to do more now. Later that night, I was thinking about my response and why it was true and I realized something extremely important. At that moment I realized that somewhere along the road, I have stopped feeling sorry for my cancer brothers and sisters. I have stopped pitying them (us) and feeling sad when I see them. Instead I have an incredible respect for their bravery, their strength, and their will. I will never again feel sorry for fighters of cancer. They, and their loved ones, are the strongest people I know. They have looked their own mortality in the face and have told it to go F itself.  They have endured more emotional and physical pain than most people can imagine. They have been poisoned, and mutilated, and burned by choice. They fight, and scream, and claw their way to the light. And they come out grateful and full of life. I am honored to count myself among their ranks and they would be my first pick for any team.

I will try my very best to blog each day of this treatment. I have no real idea of what to expect, so I’ll write it as it comes. I will use all of the love we are given as my shield and I will spear my tumors one by one until they are gone forever. No matter what happens during this treatment, I can take it and I will come out better for it. And for that I am thankful.

Today I am thankful for the treatment I am about to begin, which will be my cure; I am thankful for my loving nurses and expert doctors; I am thankful for my fabulous in-laws who are taking care of Kai while we are at the hospital; I am thankful for our amazing MMG family who has begun again their incredible circle of support; I am thankful for our extraordinary friends and family who reach out to us daily to offer love and hope; and I am thankful most of all for my wonderful Jeff who sits by me and feels my (and his own) pain every second, and for our perfect baby Kai. I miss you with a pain that brings tears to my eyes. I love you more than I could have ever imagined. I promise I will win for you, my baby, my love, my soul, my life.

August 16

Dr. Rosenberg called us today. It turns out that he would like to try a treatment other than MAGE. It’s a different type of TIL treatment. They have already grown my new cells for TIL; Dr. Rosenberg said he checked on them and they have grown very well and are showing great activity, so that’s good news.  He wants me to do a treatment where they take the new cells and genetically engineer them with IL-12. IL-12 is a substance that your body naturally produces (like IL-2) that stimulates your natural immune system to amplify specific activity of T cells. He said the IL-12 makes the TIL cells super powerful. Because the TIL cells themselves will be infused with IL-12, I do not have to also have IL-2, which is the most fabulous news. Also, because we are local to NCI, I can do a lot of this treatment outpatient, which means much less time away from baby Kai! First I will get chemo for seven days to kill my current immune system. It is a combination of two drugs.  The first one is given for two days. It is very toxic and I do have to be in the hospital to receive it (and for two days prior to receiving it so I can be properly hydrated). The second one is given for five days, and for that one I can stay at home and go to the Clinical Center every day for an infusion. After the seven days of chemo, they will give me the new cells. I don’t know how long I have to stay in the Clinical Center for that process, but at least a few days. Then I can go home again, but I have to go back to the Clinical Center every day for a number of hours to be monitored (so they can ensure that my white blood cell counts are increasing like they should, since they will be at zero after the chemo). I don’t know for how many days I have to return to the Clinical Center for monitoring, but I am guessing a couple of weeks. Here is the exciting part: I will be the first person in the entire world to ever receive this treatment at the dose they will give me. They have tried it previously at lower doses with good results and have just obtained approval from the FDA to try a higher dose. Dr. Rosenberg said that they are projecting that the dose they want to give me will be the ultimate dose for this treatment. He said in the trials they have done with mice, the IL-12 has made the TIL cells 100 to 1,000 times more powerful than seen with the standard TIL treatment. Because this is not only an experimental treatment (like all of NCI’s cell therapies), but also that I will be the first person to ever receive this dose, they will be monitoring me very closely to observe the results, side effects, and everything else that might happen. I’m very excited. It’s exciting to be the first person to get this dose, it’s exciting not to have to do IL-2, and it’s very exciting to not have to be away from baby Kai for more than a few days at a time rather than 3-4 weeks straight! Dr. Rosenberg was very excited about this treatment. It’s experimental, so there are no promises (not that there are promises with any cancer treatments, but with this one there’s not even any human data for what I’ll be receiving), but he said “I have the utmost confidence that this will solve your problem.” Now that is not a guarantee and should in no way be taken as one, but when Dr. Rosenberg, the pioneer of almost every existing treatment for melanoma, tells me that he is confident in my next treatment based on my specific health information, that’s about as much hope as I could ask for.  And for that, I am thankful.

I will still go to the Clinical Center on Friday for apheresis, because they will freeze those white blood cells just in case I need to do the MAGE treatment in the future (they want to take cells before I get any chemo) and I still need an MRI of my brain. And after the TIL/IL-12 treatment, it is still going to be a long road to recovery because of the magnitude of what I will be going through physically. But I am ready, bring it on. I am going to kick some cancer ass. You messed with the wrong momma, cancer, because you mess with me, you mess with my baby, and for that I will destroy you. So new plan, new treatment, new hope. I’m feeling feisty, watch out.

Today I am thankful for this exciting new opportunity; I am thankful that Dr. Rosenberg called us personally to explain this treatment and why he thinks it is right for me; I am thankful to be young(ish) and strong and ready to fight; I am thankful for the time I will be able to be home with baby Kai instead of in the hospital; I am thankful for our extraordinary MMG family who has already begun making plans for how to support us through this next round of treatment (we love, love, love you); I am thankful for our amazing friends and family; and, as always, I am thankful for my wonderful husband Jeff and our perfect baby Kai. I have no more tears, sweet baby, there’s no doubt I will win now.

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.

July 13

Living with cancer is a constant exercise in emotional duality. Ninety percent of the time I feel two conflicting emotions, equally as strong, at the exact same time in regards to the exact same situation. I am simultaneously ecstatic that the treatment is working and terrified that it will stop. I am extremely grateful for everything this journey is teaching me and totally pissed off that it’s happening at all. I am confident that I will be cured and I am nauseous with fear at leaving Jeff and Kai. The same is true about returning to work. While overall I am thrilled to be back with people I love at a job I love, the cancer goggles show two different worlds. On the one hand, returning to work signifies the beginning of living with cancer. While I was home, entirely focused on Kai and cancer-related issues, the cancer felt like an encapsulated event. Like something we had to pause to deal with, but that we would get rid of it and then afterwards go about our normal lives using the lessons we’ve learned. But incorporating the “normalcy” of going back to work makes the cancer part of our real lives. It is something that exists along with us.  And that makes me feel like a cancer patient more than anything else has so far. However, on the other hand, I am extremely proud of us for being able to go about our normal lives, dealing with everything as best we can (and in my opinion, we are doing a pretty good job). I am thrilled that we can manage daycare, and working, and taking care of the house, and eating, and doing chores, and everything else that is involved in everyday living, while knowing that the cancer is riding along with us. And that pride that I feel for me and for Jeff makes me really very happy. I am proud of myself for juggling it all, even though I am equally terrified that a flaming bowling pin (or more accurately, a flaming tumor) may get thrown into the act at any point. But this is our life now. We are going to be simultaneously living with gratitude and waiting in fear until the cancer is gone. And it will be gone. I don’t know when, but someday, it will be gone. And I am extremely lucky to have a job that I love at a company comprised of such loving, supportive, generous souls.

I am back to work three days per week. It is really good to be back. I missed everyone a lot and our patient recruitment work is more interesting to me than ever before now that I know what it’s like from a patient’s perspective. Kai goes to a fabulous, loving, playful babysitter named Betsy those three days. Monday was our first day. Everyone told me that I would be devastated the first day leaving Kai, but I wasn’t. I don’t know if that makes me a bad mom, or if it just means I have total confidence in Betsy (which I do), but either way it was a relief.  I think it’s a really good environment for him. She watches five little girls aged 2, 4, 8, 9, and 12 in addition to Kai. Remembering what I was like at ages 8-12, I am sure that Kai will quickly become a much-loved baby doll, carried around and dotted on all day long. I have no doubt he is going to get lots of attention and lots of love, which are really the only things that matter. Mr. Kai is 9 months old today. He has four teeth and eats three meals a day of regular food. He seems to be in no hurry to get moving but he can sit and play by himself for long periods of time, which is ideal because he stays where I leave him, happy and content. He continues to be the cutest, smartest, funniest, coolest, happiest baby ever born and I love every second of him.

There is a series on Showtime called The Big C. It is about a 42-year old woman (Laura Linney) who just found out she has stage 4 melanoma. I’ve only seen part of the first season, but so far it is about her reaction to finding out her diagnosis. Her overall response is to become fearless and do everything she was unable to do previously – like speak her mind, cut loose and have fun, not care what other people think. I don’t know if the show is based on a book or maybe someone’s real experience with cancer, but I am sure that her reaction is a very common one. She is resigned to dying and doesn’t worry about the future. For example, she cashes in her 401K and buys a sports car. I like her character and I like the show. But it is, so far, very hopeless. Maybe her character will change over future seasons and this first season is just meant to show her initial reaction; I guess we’ll find out. Overall I don’t relate to her initial reaction, although watching her makes me feel less lonely. And watching her also makes me wonder if I am going about my own reaction incorrectly. I wonder if I should be seizing the moment more. In my confidence that I will be cured, am I wasting precious time? Is there a happy medium between giving up and ignoring the possibility of defeat? Is there something more I should be doing with life right now? I don’t talk to many other people with melanoma. I’m not part of any support groups or online communities. I am not ready to relate that way, because right now I am someone who is having a crazy, but quick, fight with melanoma and I will no doubt be cured by the first treatment we try. I am not yet a cancer patient, and right now looking at cancer communities and discussion boards and support groups actually serves to give me less hope. So, I’m not really sure how other people like me reacted when they found out their diagnosis. Laura Linney’s character, Cathy, doesn’t tell anyone she has cancer.  The only person who knows so far in the episodes that I’ve seen is her neighbor, who is a somewhat surely 79-year old woman. When she tells her neighbor, she looks right at Cathy and says, “Well ain’t that a Mother F-er” (although not as edited). And that is it. That is the exactly perfect thing to say when someone tells you they have cancer. You just look them directly in the eye and say, “Well ain’t that a Mother F-er.” Because when you take all of the emotion, all of the anger, worry, fear, and sadness that you experience when you are first diagnosed, it all boils down to “Well ain’t that a Mother F-er.” And yes, yes it is. But then you realize what else it is, which is an eye-opening, heart-warming, soul-freeing new lease on life for which I am thankful every minute of every day. However else having cancer impacts my life, it has made me realize how truly happy and fortunate I am. Even though I hope every day for it to be gone as quickly as possible, it has become a friendly guide who constantly points out all of the amazing things around me. And without it, I may never have even seen how tremendously fantastic life really is. Thankful doesn’t even begin to express how I feel about that. I guess nobody’s reaction is right or wrong. You feel what you feel in all situations in life. It is not how something makes you feel, it is how you act on it; how you let it affect you, with gratitude or with anger.  Both are correct. But for now, I will stick with gratitude.  In the words of Barenaked Ladies, “You gotta kick at the darkness ‘til it bleeds daylight.” Yes sirs, you do. You have to keep on kicking and kicking and kicking until you win the World Cup and rip off your shirt in an overwhelming, whole-hearted display of sweet, sweet success. And that is exactly what we will do. So maybe we’ll be quicker to go to the Grand Canyon, and try new restaurants, and take Kai places we’d like to go with him, but I’m not cashing in my 401K yet. I’m going to need that in 30 years. And for that, I am thankful.

Today I am thankful for Betsy and the love she is giving to Kai on the days I am at work; I am thankful to return to my fabulous MMG family and for the new perspective I have on the work we do; I am thankful for the perfect balance between being back at work and getting to spend time with Kai; I am thankful for the continued support of our neighbors; I am thankful for our consistently amazing friends and family; and, as always, for my extraordinary husband Jeff whose complete love and devotion overflow my heart on a daily basis, and our perfect baby Kai. Kick, my sweet baby, kick as hard as you can and never ever stop.