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.