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.

June 30

After scans yesterday and this morning, this afternoon we received the fabulous news that the tumors are still shrinking – the IL-2 is still working! We go back in 6 weeks to do the scans again and re-check the progress. But for now, we are free for 6 more weeks. It is time to reclaim our lives and move forward. I will post more this weekend, but for now the news is still sinking in and there are too many emotions to process coherently. Because of the tumor that grew on my neck, I was so nervous for the results today and as positive as I tried to be, I was genuinely surprised at this wonderful news.

Today I am thankful for life.

June 22

Without a doubt, one of the things I am worst at in life is waiting. Waiting, waiting, waiting. There is so much waiting involved in this journey. My next scans are next week (Wednesday and Thursday) and I am so anxious about what they will show. If a tumor hadn’t grown in my neck, I wouldn’t be nervous. And even now, I’m still confident that the IL-2 is working and we will get good news on Thursday. But I’m sure there would be fewer knots in my stomach during these days leading up to the scan if that tumor hadn’t existed. I tend to get stuck while I’m waiting. It doesn’t matter what it is I’m waiting for, I am almost completely unproductive during waiting times. I should be getting Kai’s things ready for him to begin daycare in July. I should be making lists, and grocery shopping, and making food to freeze, and getting myself prepared to go back to work. Instead I am consumed by waiting. I know I need to get used to this, because waiting for results from the next scan is about to become part of our normal. I will get them every month, and every month the fear will rear its wide-eyed-tearful-angry head until we receive that month’s news and I can loll it back into a quiet slumber for a few more weeks. But these upcoming scans are especially important ones (for my own psyche). The previous scans showed that the original tumors are still shrinking and there’s no sign of new disease. But a tumor grew on my neck, so what does that mean? It could mean nothing important or it could mean the IL-2 will stop working, and all we can do about it is wait.

The surgery to remove the tumor went well. I had to stay overnight the night before the surgery because I was the first case in the morning, but I went home the next day, just a few hours after the surgery. I was under general anesthesia, so I didn’t feel a thing, and recovery has been easy.  A very strange side effect (and I’m not positive it’s even related, but the timing is very suspicious…) is that I have become farsighted. I can’t read anything up close. I don’t wear glasses and I’ve had perfect vision all my life, but since the surgery my vision has definitely been altered.  Strange. I am waiting for my doctor to call me back and hopefully she’ll just tell me that it’s normal and will correct itself soon. And if not, well then of course the tradeoff is worth it. It was bound to happen one of these days anyway – even though I am surprised every time I make this realization, I am not in high school, or even college, or even my 20s any longer.  My mom stayed with us last week to take care of baby Kai. She will be back next week to watch him again while I go for scans.  Thank goodness for moms.

My sweet Jeff had his first Father’s Day!  He’s such a fabulous father; he deserves to be recognized every day. My dad (who is also a fabulous father) and step-mom came for the weekend so we could all celebrate together. Jeff made his infamous ribs on Saturday, and Sunday we went out to breakfast and hung around at home with Kai. We have lots of fun things planned for the next few weeks. Friends we haven’t seen in over a year are coming for dinner on Thursday, Jeff’s cousins are coming over on Sunday, and next weekend we are going to the Eastern Shore to stay with friends for 4^th of July.  In the middle of all that we have the scans, and I am confident that this cancer does not want to get in the way of our fun so the results will be only good news.  After we get good news next week, I have to start preparing to go back to work – my return date is tentatively set for July 11^th. Because my maternity leave flowed right into crazy cancer leave, I will have been out of the office for 9 months. That is a long time. Even though the circumstances could have been better, I am extremely thankful for the extra time I’ve had at home with Kai. If we hadn’t been given this gift of a journey, he would have started daycare 6 months ago and I would have missed all of this precious baby time.

If it were possible to separate the worry out of this journey, leaving just the treatment, then I think undergoing the IL-2 would be worth the extra time with Kai. But the worry and the fear are such an enormous part of all of this. The emotional trauma is so much bigger and longer-lasting than any physical pain from the treatments, and it is impossible to divide this journey up into individual experiences even in my mind. But it is the collective experience that has been the gift. It is the excruciating pain coupled with the soul-warming love and support: the perfectly synchronistic melding of two extremes working together to change our lives forever. And through it all - all of the worry and fear, all of the anger and sadness, all of the pain and sickness - I am eternally grateful for the depth of the raw, love-filled, truth-seeking, experience-sharing, soul-touching humanity that embraced us right from the start and has continued to light our way throughout this journey. And I have learned that the only thing that matters in the whole of life is other people, period. I am thankful every day for the people who are loving me in so many different and meaningful ways, and I hope that one day I can find an appropriate way to express my own love and gratitude to everyone who so sincerely deserves it.  

Today I am thankful for the overwhelming, continued love and support of all of the extremely generous and thoughtful people who have touched our lives; I am thankful for those who have reached across distance and time to offer support as well as those who support us every day;  I am thankful for the IL-2, which I’m sure is still working and will be my cure; I am thankful for the ongoing, awe-inspiring support of our MMG family (and most recently for the fabulous wealth of books for baby Kai – we read them every day and he loves them) and our fabulous neighbors who are still boldly displaying hope signs down the entire street; I am thankful for all of our friends and family who remind us every day how much we are loved; and I am thankful with a debt that can never be repaid for my extraordinary husband Jeff whose dedication and strength I can only hope to live up to, and our perfect baby Kai. You are becoming an incredibly sweet, inquisitive, happy person, my little one. While I treasure every second and often wish I could stop time right here in these perfect moments, I also cannot wait to see who you will become, because I have no doubt that you will be far better than even the best of me.

June 6

Dr. Schaub called today with the results of the lab tests. The tumor on my neck is melanoma.  They had their weekly meeting this morning (where all the doctors in the branch meet to discuss each case) and decided they would like to remove the tumor instead of moving on to a new treatment. If we do a cell-based treatment, like the TIL treatment, they will have to wipe out my current immune system to make way for the new cells. If they wipe out my current immune system, then the progress of the IL-2 on my other tumors will be stopped. They feel that the success of the IL-2 in shrinking the tumors in my liver and pancreas is too important to stop now. Also, if they remove the tumor in my neck, they believe it will contain better cells from which to grow new cells for a cell-based treatment. They still have the cells they grew from my liver cells, but because they got those cells from needle biopsies rather than from the full tumor, they aren’t positive about the quality of the new cells. Plus, since they harvested and grew the liver cells, some of the criteria to have the cell-based treatments have changed to require that a higher number of original cells be obtained from a tumor. So, for these two reasons (don’t want to stop the progress of the IL-2, and believe the tumor will provide better cells to replicate for TIL or something like it), they will remove the tumor. Then we will continue to have monthly scans to determine the ongoing progress of the IL-2. It could be that nothing new ever grows. Or it could be that the tumor on my neck is an indication the IL-2 may stop working. Either way, we will wait to see what happens before moving on to another treatment. If the scans show new tumors, or that the current tumors stop shrinking, then we’ll try something else. I am happy with this decision. Going through the IL-2 was very difficult and it’s having a good result so far. I am happy giving it more time to see how far it can go. I still believe it can be my cure. And I am extremely thankful for the effect it is having on my liver and pancreas. They aren’t sure when the tumor on my neck started growing. They didn’t see it in any previous scans, although they were not really looking for it. They only knew about it because I felt it (from the outside- I would guess it’s about the size of a marble, although this always seem to feel bigger than they are). It could just be a crazy thing that grew, they’ll remove it, and the other tumors will continue to shrink until I am cured. I’m sure that’s what will happen. 

It’s difficult to live normally between scans. It’s like my life (our lives) is now going to be measured month-to-month. My next scan will be at the very end of June and now that I know there is a new tumor, I feel like I’m again trapped in the void of wait-and-see. I have to keep moving forward, keep making plans. But any plans past June are plans in which I am not fully vested emotionally.  How can I be, when the plans could easily change from whatever fun or normal activity it is, to deciding on and undergoing another treatment? I feel stuck. I am tired. I am so very very emotionally tired. I cannot wait for the day when I wake up and my first thought is about something like what I might wear that day or what Kai is going to have for lunch, rather than opening my eyes to remember that the bad dream is reality. I am sure it will get easier with time. I have no doubt that as we get more and more good news after scans over the next few months, the cancer will start to fade to the background and my “real” life will take over. I am thankful for that day.

Today I am thankful for the wonderful progress that the IL-2 is making; the quick decisions of my doctors and my utmost confidence that they have only my best interests in mind when making decisions; an awesome spur-of-the-moment visit from Judy; my mom who thankfully is still staying with us; all of our amazing friends and family; my wonderful husband, Jeff-I am so sorry for this setback but please know that it will not deter my victory-and our perfect baby Kai. I love you, baby Kai. While I can’t always predict what might happen next, I can always promise you my love.

June 2nd

The results are in and overall it's great news. The tumors in my pancreas and liver are continuing to shrink and the scans didn't show anything new. So, that's fabulous. I do, however, have a node on my neck that you can feel from the outside. The doctors are suspicious that it is melanoma. They took six needle samples of it today. They looked at four of the samples and only saw fatty tissue (no lymphocytes). The remaining two samples they didn't look at; they took them directly to the lab for testing. We will find out the results in about a week. If the lab determines that the node is melanoma, then we will have to do a new treatment (most likely a cell-based treatment like the TIL treatment). If the test is inconclusive, or even if it determines it is not melanoma, then they will take out the node to see what it is. If they take out the node and determine it is not melanoma, then that's fabulous, we are in the clear, the IL-2 is still working and we go about our lives as planned for as long as the IL-2 keeps working. If they take out the node and determine it is melanoma, then we do the same thing, because I cannot get another treatment once the node is removed. Because the other tumors are shrinking, if I were to get another treatment after removing this node, then they wouldn't have a tumor to measure the treatment's success against. So, if the lab determines that the node is melanoma, then we leave it in and I get another treatment, the success of which will be measured by the decrease in size of the node. If the lab results are inconclusive, but we remove the node and it turns out to be melanoma, then we just wait and see how long the IL-2 keeps working in the other tumors. The best result would be for the node not to be melanoma. I'm not sure what I think would be the second best option. I don't want to do the TIL treatment unnecessarily, but I also don't want to spend every month terrified of my scan results. Fingers and toes crossed that it is simply not melanoma. Considering everything else the IL-2 can do to your body, there's no reason for me to believe it can't cause a fatty node to develop. That's my story and I'm sticking to it until I hear otherwise (which isn't going to happen). So, the news today was overall very good. The tumors are continuing to shrink and that's what we are hoping to happen. Champagne all around.

I didn't mean for there to be so much time between this post and the last. I meant to keep current on what was going on throughout May. But it turned out that May was my escapism month. Once we got the results of yesterday's scan, I knew we would be planning for next steps - whether they be more treatment (which of course they won't be) or returning to work soon. Either way, I would have to do something. But in May, before we knew the results, before I would be able to think about preparing for what's next, I just got to be. I got to hang out with my fabulous baby, see friends, and not think about what might happen next. I found that I didn't want to blog because then I would have to remember that I have cancer. If I didn't blog, and didn't have any doctor's appointments or treatments, then I could just pretend to be my regular self instead of my cancer self. I needed a break from my cancer self. Since my last post, Kai and I have started taking a weekly music class with our friends Renee and Thatcher (who is just a few months older than Kai). It is every Tuesday. Nobody in the class except Renee knows that I have cancer. I'm just a regular mom with a baby and we take a music class. It's great. Also, Jeff and Kai and I took a family vacation to the Eastern Shore of Maryland. We stayed at a Hyatt family resort and it was absolutely wonderful. There were hundreds of kids and babies all around, which made it a perfect place to take a little one. We took Kai in the pool for the first time and he loved it - we went swimming every day. I wanted to live there. It was a fabulous first family vacation and will, I'm sure, lead to many more. Otherwise, we basically just hung around at home, and with friends/neighbors and family. It's fantastic getting to spend time with Kai. He is such an amazing little person and I am so thankful for this extra time at home with him. He continues to develop in leaps and bounds. He doesn't seem in a hurry to get moving any time soon, but he sits up perfectly, plays on his own for long periods of time, expresses his wants and dislikes, and reaches for things and people (which is my absolute favorite). It's just incredible watching him grow. While I don't want to wish his baby time away, I am anxious for him to be able to talk, because I bet there are things going on in that mind that I would never dream possible.

There has also been some time in May that I have been teetering on the emotional edge. There are times when the reality of what is happening crashes over me like a huge wave of despair, and most of the time I feel like I have to keep moving or else my mind will break. So when I say May was my month of escapism from cancer, I mean that in a literal sense, to the point where sometimes I could pretend it wasn't true, and even had to pretend to make it through the day. People have a great capacity for dealing and surviving, and I will not be an exception. But it is hard. It is scary and it is sad and it is angry and it sucks. But that's all part of this magical journey and I am thankful for the depth of emotion I am allowed to feel - across both ends of the spectrum. I'd rather feel a lot of things deeply than nothing at all. So, I embrace the negative with the positive and know that it is all working together to make me stronger. I have no doubt that I will survive this battle; it is just the length of the fight that is in question now.

I am hoping that it doesn't take a whole week to find out the lab results. I am sure that Dr. Schaub will call as soon as he knows anything. He and Drs. Hong and Rosati will be rotating out of the surgical branch in July, so if I have any treatments after this month, I will have new doctors. I'm sure the new doctors will be wonderful and I fully understand the necessity of the fellowship program, but I wish it weren't the case. I wish I could continue to be treated by the same doctors who began my treatment. But I'm also certain that the node will not turn out to be melanoma and the IL-2 will cure me, in which case I will have been treated and cured by only one set of doctors. If there is no more treatment to be done now, I am planning to return to work July 5th. I'm only going to the office three days a week for now. We found a fabulous woman who will watch Kai in her home three days a week. She watched the two kids next door - who are now in Middle School and about to go off to college (Cornell), both of whom are super fabulous people - so I'm excited for her to be part of Kai's life too. It's somewhat difficult not knowing the lab results right now, because I can't begin mentally preparing for what's next. But I guess that's not such a bad thing and now I have one more week of escapism. And for that I'll be thankful.

Today I am thankful for the fabulous news that the tumors continue to shrink; for the continued support of our amazing neighbors and MMG family; for our fabulous friends and family; for my mom who is staying with me and Kai while Jeff goes away for work this weekend; for the absolutely gorgeous weather; for all of the continued comments, emails, texts, phone calls, and letters of support; for all of the treatment options still available just in case; and as always, for my fantastically wonderful husband who planned such a perfect vacation - I love you, I love you, I love you, and our perfect baby Kai. Your normal won't always be cancer normal, little one. Soon you will just have a regular normal like everyone else; I promise you that.

May 13

The team that raised money for and walked in the Melanoma International Foundation’s melanoma walk at Villanova raised over $6,000. They received an award for being the second highest fundraising team out of more than 40 teams. That is just fabulous. Thank you so much to everyone who contributed and who walked or ran at the event. This amazing showing of support is just overwhelming to me. I wish there was something awesome and magical I could say to express my appreciation, but words fail me and an inexpressible sense of love, gratitude, awe, and inspiration fill me from head to toe. The continual coming together of people to support us personally and to support melanoma research is way above anything I would have ever imagined. It is the shining star on this journey and it will shine in my heart for the rest of my life.

Baby Kai turns 7 months old today. Every day he grows more and more into a person with his own desires, opinions, and expressions.  He’s eating all kinds of foods now, is sitting up on his own, points and reaches for what he wants, and is sleeping through the night like a champ. He still just has the two bottom teeth, but more are coming soon.  He’s an absolute delight and every second with him is the best second of my life. It’s so exciting to watch him grow. When we look at pictures of him over the past 7 months, and see how tiny he was in the early months, I can hardly even remember those days (and they weren’t that long ago). I understand now why nobody tells you exactly how difficult the first 6 weeks are – it really does get erased from your memory and all you know is the wonderful age your baby is now.  It’s strange to think he was only 3 months old when our cancer journey began. He’s now been alive longer on this journey than before it started. And we are hopefully coming to the end of the cancer and he will know only “normalcy” and peace from now on.

I’m in somewhat of a mental limbo right now. I am stuck between the treatment behind me and resuming “normal” life in the days ahead. I can’t go back and I don’t feel yet like I can go forward. I don’t know what “normal” will mean now. It can’t possibly be the same as before; I can’t possibly resume life as if this never happened no matter how quickly I am cured. Being a cancer survivor will always define me. It is a battle like no other and I am sure the scars are permanent.  The thought of leaving this limbo is terrifying. I can’t rectify in my mind the extreme difference between lying in the Clinical Center, hooked to tubes and machines, in a painful semi-conscious state, to getting up, getting dressed, packing lunch, and going to work as usual. And it’s not just work, it’s everything. The cancer bubble is isolating and all consuming. There is a safety inside this shell. Once I break free, I have to find a way to mesh both worlds together and right now, I don’t know how to do that.  I guess the answer is just to do it a little bit at a time until the two worlds naturally become one and a new “normal” is created. I just have to start taking short trips outside of the bubble – going to the grocery store, taking Kai to story hour, attending social events – and doing everyday things like cooking, cleaning the house, and working in the yard until one day I am just a person again; a person who had cancer yes, but not someone consumed by it. That is not to say that I will be the same person I was. I will not ever be that person again. The awesomeness of this journey has changed me permanently. This is my chance to become a better person, to appreciate each day, and to enjoy life as much as possible. These feelings are here now and I know that they will become stronger and stronger as the cancer part of this experience is left behind.  Right now the scariest part for me is thinking about if the IL-2 stops working. The doctors fully expect that the scan on June 1^st will show it is still working (the tumors are still shrinking) because of the strong response shown after the first round of treatment. But it will be starting with the August scan where we begin to get nervous each month. And what if I finally break free of the bubble, assume a new “normalcy” and settle in to that mindset, and then BAM, we have to start all over again. That is the thought that is keeping me from moving forward now.  It may seem strange to call this limbo a comfort zone, but that is what it has become. I exist inside here, in my mind, wrapped in a layer of protection from the outside world. Of course I can’t live like this long term, but what if I do all of the hard work of breaking free and then I have to do it all over again. And if I do have to do it again, it will be with one entire treatment (the IL-2) crossed off of the list of possible cures and I have to begin a new treatment knowing that one has already failed.  What will my hope look like then? But I shouldn’t be harping on negative what-ifs. It is an indulgence and a cop out on moving forward and embracing my wonderful new life.  The IL-2 will cure me.  Nothing new has grown and my existing tumors have already shrunk about 45 percent. There is no doubt that the next scan will show them to be even smaller,  and that each following scan will do the same until the fabulous day we get the news that they are gone completely. I will live my life fully, with these lessons, and as an unstoppable warrior who can face any challenge head on with love and determination.  My wonderful friend, Kristen, who, understanding that IL-2 cures 5 percent of people who try it, said recently “Jamie, I have known you for 30 years, and you have never not been in the top 5 percent of anything.”  Sister, those words are my life boat. Bring it world, I got this.

Today I am thankful for the IL-2 that will cure me; the money raised and community created for the Melanoma International Foundation; my mother- and father-in-law who are still caring for us each day; my parents who show me only hope and support; the continued support of our neighbors and MMG family; all of our amazing friends and family; the amazing personal stories that people have shared as comments to this blog, thank you for reaching out to me and allowing me into your lives and hearts; and, as always, my fabulous husband Jeff (I am so excited to spend each new day with you, my love, my partner, and my best friend), and our perfect baby Kai. No matter what else I am or will become in life, I am first your Mommy, and for that I am the most thankful of all.

April 27

I am home.  I came home on Sunday. I am so tired this time. I’ve been meaning to post for days, but just couldn’t get the energy to do so. This time was different. I felt much “sicker” during the treatment. I slept almost the whole time. I spent each day in a constant state between sleep and wake, not quite sure what was real and what was a dream. I got six doses.  The doctors were happy because usually the second course (the third and fourth rounds added together) results in significantly fewer doses than the first course (the first and second rounds added together), but my first course was 14 total doses and my second course was 13 total doses.  Nothing too exciting happened this time; I didn’t end up in the ICU and I didn’t have any hallucinations. But I felt very ill and so tremendously tired that I could hardly move. Thankfully recovery is generally relatively quick.  The descent down to the eighth layer of hell is a slow and steady trek, but once you get to the bottom there is a hot air balloon waiting to carrying you softly and quickly back up towards the sun. I am still so very tired, I have a rash covering half of my face, and I am having some strange mental disturbances – the boundaries between sleep and awake are still unclear, I’m not sure what’s real and what I’m imagining, and I’m having a lot of trouble remembering things. The nightmares remain, but they prescribed pills to help this time. So it’s just a matter of waiting it out and slowly returning to normal. And now we are finished with the IL-2. No matter what happens next, I will not have to do IL-2 treatment again. We’ve completed an entire treatment. And with continued luck, the next scans will show that the tumors are continuing to shrink and the IL-2 will be my cure. I had a 15 percent chance of responding to the IL-2 and since I entered that 15 percent, I now have a 30 percent chance that it will cure me.  I have no doubt I am part of that 30 percent. To do one treatment and have it work is just pure fantastical luck, and I know there is not one patient on the unit who wouldn’t trade places with me in a minute. I knew the universe wouldn’t give me such happiness and such a perfect little baby and then take me away. It’s a balance; I am paying for my wonderful life, and the tradeoff doesn’t even come close. Not only have I been given the gift of new life, I have also been given the gift of this amazing journey. I have been given the gift of extraordinary friendship and love and support and connection. I have been given an overflowing abundance of understanding and awareness and gratitude. I have been given so much more than I deserve and I will spend the rest of my life trying to live up to and repay these gifts.  

Baby Kai grew up so much while I was gone. He is sleeping without a swaddle now, which is very exciting. And he’s eating all sorts of new foods. So far squash, sweet potatoes, bananas, and zucchini.  The only one he didn’t like on the first try was bananas, but he ate it anyway, because he’s a perfect eater of course. He’s still all smiles all the time, even though he’s teething, and is having a fabulous time with his grandparents who have been taking excellent care of him. Today was his 6-month doctor’s appointment. He weighs 16 pounds 8 ounces, is 27 inches long, and took his shots like a champ. Jeff and I celebrated our second anniversary on Monday. We had a fabulous dinner made by our friend/co-worker, Angela, and shared a wonderful bottle of champagne with Jeff’s parents. We couldn’t go out, but at the end of May we are taking a trip to the Eastern Shore (Maryland) to celebrate our anniversary and the end of the IL-2. We’re really looking forward to our little family trip with Kai. Most exciting is that they have multiple pools and it will be Kai’s first exposure to swimming. Right now just the thought of leaving the house makes me want to take a nap, but I know by then I’ll be feeling much better and we’ll have a great time

Of course I’m thrilled to be finished with this treatment.  Of course I am overjoyed to be home. But it is strange to think I will not see my wonderful nurses again.  I will continue to see my doctors every month when I get scans to check the progress of the treatment, so they will remain a frequent presence in my life. But the nurses who so lovingly cared for me 24 hours per day, I may never see again. While I am positive that they cared about me as a person, and not just a patient, caring for people who are undergoing horrible treatments and desperately clinging to life is their job. They do it every day. They see the illness and the fear and the sadness day in and day out, and I have to image that to be able to provide this care, they have to desensitize themselves somewhat from the horror they witness every day. But being a person undergoing horrible treatment and desperately clinging to life is not something that happens to a person every day. And going through that illness and that fear and that sadness is an emotionally all-encompassing catastrophic event. And it is manageable mainly because of these wonderful, caring, healing goddesses. These nurses, who have devoted their careers to bringing comfort to people who are suffering from late-stage cancer, do not just go through the motions of administering medications and taking the necessary labs. They sooth, they comfort, they care. They anticipate what side effects might occur, they remember which medications work best, they are aware of the ever-changing emotional states of each patient. If this were a movie, my remembrance of these fabulous nurses would be a musical montage, set to Arms of an Angel by Sarah Mclachlan. It would show these tremendous women standing in my door doing a happy dance for getting me a private room; rubbing my back while I leaned over a bucket throwing up; coming with medications before I even asked in the middle of the night; keeping me company, sitting by my bed telling me about their lives; always smiling, always believing, always hoping, always curing. They were just doing their jobs, but to me they meant the difference between despair and hope, between teetering on the edge of darkness and resting comfortably, between falling into a self-definition of cancer patient who needed to be cared for and realizing myself as a person who would continue to fight. I cannot over-emphasize their importance to my cure. They provided medicinal comfort, but the greatest comfort of all was their ever-present empathy. Theirs were the arms that held me tight while the chaos swirled all around me. They are my healing goddesses and I will hold their comfort in my heart always.

A boy I loved in high school fought his own battle with Leukemia. Unfortunately, the cancer was stronger than the treatments available and he died, in a hospital in Philadelphia, in a room just like the one I was in.  During the first two rounds of IL-2, when we believed but didn’t know for sure if the treatment was working, I spent a lot of time, mainly late at night, wondering if I too would die in a hospital room.  And with a regret still almost too painful to think about these 15 years later, I know that I was not there for him like I should have been. I did not understand what he was facing. I did not fully consider his pain and his fear. I mainly focused on how the situation affected me and my feelings. I can say I was young. I can say I didn’t really believe he could die. But I think the truth is that I didn’t try hard enough.  And so I add to my list of lessons this journey has miraculously provided, the lesson of understanding at least a small piece of what he endured. His fight was longer and harder than mine, and I do not pretend to know everything he thought or felt. But I was given a glimpse of better understanding and for that I am thankful.  And from now on, I will understand what it means to someone to suffer from a potentially incurable illness. I will know their fear, their worry, their guilt, their pain, their terror. I will see the struggle they face each day when trying to fit this all-encompassing overwhelming event into some kind of regular daily life. I will know how very much the love and support of others can lift your heart and your soul. I will have empathy and I will remember to share it whenever possible.  Everyone undergoes their own unique experiences that make them empathetic to others.  We all know what it is to experience fear, pain, loneliness, joy, pride, anticipation. But I know that I don’t always remember to share in others’ experiences – to reach out and let others know that I understand how they are feeling and to feel with them. And I don’t know if it’s because I am afraid of intruding on others’ lives, or I am worried they will think it is none of my business, or I just simply think they won’t care that I care. But the thing I am the most thankful for of all through this journey is other people connecting with me, other people reaching out to me and telling me they care, other people going out of their way to show me love and support, other people seeking me out to share their personal stories and understanding. It has been so powerful that it has turned an emotionally traumatic, physically harrowing experience into the greatest gift I have ever received. It is other people’s love and support that has guided me through this darkness, and the only way I can repay this debt is to remember to use my own heart to light the way for others in the future.

Today I am thankful for the fundraising efforts of my Wilson bulldogs for the Melanoma International Foundation walk this coming Saturday.  Because of the extremely generous donations of so many loved ones, they are close to realizing their fundraising goal of $5,000. Thank you so much to everyone who has donated and who is participating in the walk, with special thanks to Karin and Dana who have put such effort into organizing the event. I wish I could be there with you in body, but know I will be there fully in soul. I am also thankful for my amazing doctors and nurses at NCI; the continued support of our fabulous neighbors and MMG family; every single person who has reached out to share in this journey with me; our amazing family and friends; and as always, my extraordinary husband Jeff whose unending love and devotion have been a model that I will strive to live up to – I love you more than life itself, and my perfect baby Kai. May any pain you are forced to experience serve only to define your joy.

Arms of an Angel by Sarah Mclachlan

Spend all your time waiting for that second chance
For the break that will make it ok
There's always some reason to feel not good enough
And it's hard at the end of the day
I need some distraction, oh beautiful release
Memories seep from my veins
They may be empty and weightless, and maybe
I'll find some peace tonight

In the arms of an Angel, fly away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
You're in the arms of an Angel; may you find some comfort here

So tired of the straight line, and everywhere you turn
There's vultures and thieves at your back
The storm keeps on twisting, you keep on building the lies
That you make up for all that you lack
It don't make no difference, escaping one last time
It's easier to believe
In this sweet madness, oh this glorious sadness
That brings me to my knees

In the arms of an Angel, far away from here
From this dark, cold hotel room, and the endlessness that you fear
You are pulled from the wreckage of your silent reverie
In the arms of an Angel; may you find some comfort here