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

April 19

Back again and a private room!  It’s a wonderful beginning to the final hurrah. I’m all hooked up to the IV and they’ve begun the pre-medications.  First dose of IL-2 is at 7:00am tomorrow. I am ready  -  bring it on! I am interested to see what happens this time. Dr. Hong said to expect fewer doses and a heavier response this time. Just like last time, my main goal is to stay out of the ICU (especially since I have a fabulous private room). So far I’ve seen Dr. Hong (he’s on call tonight) and a bunch of fabulous nurses who have stopped by to welcome us back. While of course I don’t want to be here receiving treatment for longer than absolutely necessary, it will be sad to leave knowing that I will not see the wonderful people here who have come to mean a lot to me.  Although I’ll be back frequently for scans so there will always be chances to come to the unit to say hello. Dr. Schaub is on vacation with his family, so another Fellow, Dr. K, will be my primary doctor for this round. He was here during my last round, filling in for Dr. Rossati, so we already know and like him.  

I’m so happy this is the last round of IL-2.  I am thankful that it’s working and all of the side effects are of course worth the outcome, but I am happy not to ever do it again.  And I am happy not to have to leave sweet baby Kai again. He is such a sweetheart and every second with him is sheer pleasure. It will be so wonderful to be home after this round, knowing that we are finished. Even if it doesn’t completely cure me (which it will), at least I know that I have some time before we would have to think about doing something else (which we won’t ever have to think about since the IL-2 will cure me).  This is just a short post to say I am here and ready to go!  I meant for today’s post to be longer and more meaningful, but it’s late and I’ve already received the sweet, sweet injectable Benadryl. My mind is mushy and my typing fingers aren’t cooperating with my thoughts. Tomorrow marks the beginning of the end. Thank goodness for that.

Today I am thankful for all of my extraordinary doctors and nurses; the IL-2 that will cure me; my mother- and father-in-law who are taking care of Kai and much more; all of our wonderful friends and family; and, as always, my amazing Jeff and perfect baby Kai. Only a few more days apart in exchange for a lifetime together.

April 14

Baby Kai is 6 months old. He had his half birthday yesterday. We celebrated with sweet potatoes. It was quite a party.  He is getting so big.  It’s like he grows overnight and is bigger each morning. It’s so awesome to watch him learn about the world. He’s so observant; always watching and taking it all in. It’s just so crazy that this amazing little creature is something we created. That this developing little life is literally part of us. And even if genetics didn’t play a role, just watching a baby develop into a person must be the most incredible experience of all. When we came home from the Clinical Center on Monday, my mom, step-dad, and Kai were waiting for us on the front porch. And when we pulled up and got out of the car and Kai saw us, he gave us the most enormous smile of happiness and recognition. He was happy we were home. That smile is the most beautiful thing I have ever seen.

This week I’m just resting and recovering. I feel good, but am very tired. My fabulous Jeff and wonderful mom are doing just about everything that needs to be done. Jeff even cleaned and organized the bedroom, which was particularly great because I’m having some weird clutter complex right now where I have an uncontrollable need to get rid of or put away almost everything around the house.  To the point where I even had a nightmare that our house was so full of stuff that I couldn’t find my way out. My mom is taking the morning shift with Kai when he wakes up for the day, so that I can sleep in, which is fabulous. I’m not getting a whole lot of sleep right now. Other than being tired, the most difficult side effect of the IL-2 is the nightmares. They are not just normal bad dreams. IL-2 nightmares are multi-layered, complex, vividly realistic experiences of pure horror. For me, they mainly revolve around me being stuck in the house (which is not my house but rather a complex, never-ending labyrinth of rooms) trying to find my baby who is in terrible danger. And in these dreams, I dream that I wake up and then something even more horrible happens.  And then I wake up again, and again something happens. And I wake up and wake up again in these dreams to the point where I have no idea when I’m awake and when I’m dreaming even when I finally wake up for real. Trying to come out of the dreams is like trying to claw my way up from a pit of unconsciousness, and I wake up drained and exhausted. The dreams are so terrible that I am afraid to go to sleep at night. The doctors said this is a common side effect of the IL-2. I don’t know if it’s the mind reacting to the treatment along with the rest of the body, which would make sense; if the IL-2 is eliciting a full body response, then the mind should be involved too. Or maybe it’s a psychological response to the pain of the treatment and the fear of having cancer. Whatever it is, it is terrifying and I am scared all the time. I am scared that someone is going to break in and steal baby Kai. I lay awake for hours just listening to make sure I don’t hear anyone. I am scared that something is going to happen to Jeff every time he leaves the house. I am scared of going back to my “normal” life. I am scared that the next scan will show that the cancer has stopped responding to the IL-2. And I am scared that I will be scared for the rest of my life. When a runner pushes herself as hard as she can, runs as fast as she can and gives a race everything she has – sometimes she crosses the finish line and then throws up. I think that is what my mind is doing now. I have been focusing so hard to a positive outcome. On powering through to the cure. On undergoing the treatments with my whole body and soul. And now that we are almost across the finish line, all of the fear and worry and sadness that have been ignored are coming out full force so that they aren’t pent up forever. So maybe it’s healthy that it all comes out now. And I embrace a natural emotional response to a traumatic situation. And not even for one second do I lose sight of how extraordinarily lucky I am. And even in the most terrifying dead of night, I am so very thankful for the gift of this journey and the gift of my cure. I know this fear will pass, and only pure joy and gratitude will remain. I already have more love and goodness in my life than I ever would have dreamed. I am already happier than I ever thought possible. And for that, I am thankful.

Today I am thankful for the gorgeous weather; my mom for all of her help with Kai and everything else; the continued support of our neighbors and MMG family; the incredible experience of this multi-faceted journey; and, as always, my most wonderful husband Jeff who has given me the most wonderful life imaginable, and my most perfect baby Kai. I am forever in your debt for allowing me the sheer pleasure of knowing you.

April 11

Home again, home again; sweet, sweet home again. This time in the hospital seemed to go a lot more quickly than the previous times and it was by far my easiest time physically. I still had all of the symptoms that I did with the first round, but, except for the nausea (which was much worse this time), they were all to a lesser degree. The doctors decided to stop on the seventh dose due to hallucinations, which this time were math equations all over Jeff’s face and a hallway full of pink butterflies, but I felt like I could have kept going if needed. The two previous rounds, I was definitely thankful when the doctors decided to stop the dosing and felt like I couldn’t have taken any more. I have a large rash on my face that interested the surgical team and the dermatology team, but they decided it was just a fluke of the IL-2 and nothing to worry about. So I have the rash, I’m extremely fatigued, and for some reason I cannot remember words very well (for example, it took a good minute and Jeff’s help to think of the word “ginger ale” yesterday), but otherwise I am feeling good and glad to be home. I didn’t have a private room this time, but I had the sweetest roommate, probably in her 60s, who was very sick and mainly stayed in her bed all day. I’m sure I was much more of a bother to her than she was to me. Overall, this round was basically the same as the first round. I had wonderful care from the doctors and nurses as usual. I saw a lot more of Dr. Rosenberg this round. He is head of the surgical team at NCI and has pioneered the majority of the existing melanoma treatments; including treatment with IL-2 and the TIL cell treatment. It was very reassuring to know that I was being treated by him personally; that he was personally vested in my cure. To see him every morning during their rounds (even on the weekends) gave me an extra boost of hope each day.  And for that I am thankful. Also, my blood work showed the same spike in my lymphocytes that it did during the previous rounds, so even though they don’t have data to prove there’s a correlation between the spike and a response to the treatment, everyone seems to agree it’s a good sign.

We came home today to a huge sign in our front yard with the words “Welcome Home” and a melanoma ribbon painted on it. Our fabulous neighbors across the street made it and put it up without anyone knowing. Also, our yard was all cleared and there were flowers planted (pansies). We have such wonderful neighbors. We knew when we came to look at this house for the first time that the neighborhood had a special feel to it, but we had no idea what a loving family we would be entering when we moved in. I look forward to being outside later in the week and getting to see everyone. We went out for a few minutes earlier today, but a few minutes were all I could take right now. Another fabulous thing that happened was that the elementary school I attended (Whitfield Elementary) had “Jeans for Jamie” day the day that this round of treatment started (April 6). The teachers paid a “fee” to wear jeans and they donated all of the money to the fundraising efforts of the team doing the walk for the Melanoma International Foundation. Every day I find out a new, incredible way that people are banding together to show their support. I know I say this a lot, but the constant and meaningful showings of support are truly overwhelming. After my next round of treatment, after the next scan, after I find out that the tumors are continuing to shrink and I am well on my way to being cured, I will spend the rest of my life being thankful for the gift of this journey. All of the fear, the worry, the emotional and physical pain, all of it put together does not come close to the awe, the joy, the love, the gratitude, the appreciation I now have for life. The treatments are not just erasing my cancer. The treatments are erasing all of the doubt, all of the resentment, all of the regret I have carried with me through my lifetime. They are smoothing over the residual bumps and rough edges left by the natural course of living. They are sweeping away the dusty “can’ts” and “don’t have times” that are always coving the “I wish I coulds.”  And they are leaving me free. This cancer has made me free. Because of how widely my eyes have been opened by the sheer magnitude of other’s love, I am now free to forget all things past I’d like to forget. I can unlearn misconceptions I thought I held. I can reshape my opinions, my mind, myself. I can see each and every day for the enormous possibility it holds. I can look at each and every person as an individual light of grace encapsulating experiences and wisdom that can enhance my own existence. I can choose to be a better person. And that is not a gift that I will accept lightly. It is a gift that I will spend the rest of my life attempting to deserve. It is the most powerful, amazing, wonderful gift possible. And for that, I am down-on-my-knees-with-tears-in-my-eyes thankful.

This week will just be a week of recovery at home. My mom and step-dad will be here through the weekend. My dad and step-mom are coming on Saturday, and Jeff’s parents are coming on Sunday to stay for a couple of weeks. I go back in the hospital next Tuesday for the final round. Then I’ll have new scans in 3-4 weeks after the final treatment is over. At which point I am sure the tumors will be gone and our new life will begin (or I guess I should say continue, since our new life began with the start of this amazing journey). We continue to be extremely thankful for our supportive family and all the help they are providing, taking care of Kai and of us. Now my eyes are closing and my fingers are typing more and more slowly. The excitement of my mind is not matched by that of my body, which has just fought a small war and is demanding rest.

Today I am thankful for our fabulous neighbors, their welcome home sign and all of the yard work they did for us; my mom and step-dad who lovingly cared for Kai and did many much-needed jobs around the house over the past week; Dr. Rosenberg for making my cure possible; the extraordinary doctors and nurses at NCI who let me spend another week in their curing embrace; all of the phone calls, cards, texts, emails, and comments of support I continue to receive; the ongoing support of our MMG family; the beautiful weather and fresh scent of Spring; and, as always, my absolutely fabulous husband Jeff who sat with me every day, all day in the hospital, and our perfect baby Kai. You will never know how happy I am to be home with you. For all of the things I am thankful, the most precious by far is you.

April 8

All is well. Just had my seventh and final dose. I was doing okay until seven and then it hit me like a pile of bricks. Extreme nausea and vomiting, horrible rash on my face, and more hallucinations just to name a few symptoms.  So the docs decided that was enough for me and seemed happy I got as much as I did so now only one more round to get through and this will all be behind us. I have no doubt the next scans will show the tumors are well on their way to being gone.
Today I am thankful for the flexibility and efficiency of the NCI; for all those who have volunteered for IL-2 trials in the past; for Dr. Rosenberg who pioneered the IL-2 treatment; continued support from our amazing family and friends; and, of course, my most wonderful husband, Jeff, who has been at my side all day, and my perfect baby Kai. After this we will only have to be apart for one more week and in turn we get a lifetime together.

April 6

I've had two doses so far (one at 7:00am and one at 3:00pm). So far not too bad. The first one brought vomiting and a fever, but after the second I am just very tired. My face is starting to swell from the water weight gain. My next dose is scheduled for 10:00pm. I'm doing well overall and will hopefully post more tomorrow. Right now I can hardly keep my eyes open and am posting through my phone.

Today I am thankful for the IL-2 that will cure me; my dedicated care team who are doing everything they can to help me; our wonderful family and friends; and, as always, my super supportive Jeff who sits with me all day long in the hospital, and my perfect baby Kai. I miss you so much, little one. I will be all better soon; I just know it.

April 5

Well, here we are again. But this time with the fabulous knowledge that the treatment is working. Knowing the horribleness is going to start again tomorrow morning is causing me much less anxiety since I know for sure that it’s working.  This time the IL-2 is my friend and I welcome her back with open arms (and liver and pancreas). We arrived at the Clinical Center around noon today and first had blood drawn. We then had a meeting in the clinic with Drs. Schaub and Yang (Dr. Yang is my new attending physician – not new to the surgical team, just new to me). They reiterated what Dr. Schaub told us on the phone yesterday, but even though we already knew the information, it was great to hear it again in person. After the meeting, we went to the in-patient unit (same unit as before), completed paperwork and saw my room. Unfortunately it’s not a private room this time, but the unit is completely full. I know there are people who are immune-compromised and need the privacy much more than I do.  But I’m still hoping something opens up for the worst of the treatment – and not just for my sake, but for my roommate’s sake as well. Either way, I will be fine. We then went to the procedures unit and had my PICC inserted by a hilarious nurse named Mash. The procedure takes about an hour and a half and during that time, Mash told me about his son’s involvement in clinical trials for ulcerative colitis. Ultimately, he had to have his colon removed and his rectum reconstructed (and is doing very well now, a year after the surgery). I am going to remember this when I want to complain about the IL-2 diarrhea, because really, a few days of that is nothing compared to having your colon removed.  After the PICC was inserted, we left for about an hour to eat dinner and then came back to unpack. Now I am in my room, settled for the night, and Jeff is on his way home. They will begin the pre-medications and hydration (through my PICC) around 10:00pm and the first dose of IL-2 will be at 7:00am tomorrow morning. Dr. Schaub said to expect to receive fewer doses overall. We shall see what happens tomorrow. All of my focus is going towards not ending up in the ICU confined to bed again. Mind over matter – no ICU it will be.

Even though it was a bit of a mad rush to get everything ready to be admitted today (when we were not expecting treatment to begin again until the end of this week or the beginning of next), I am so glad we are starting now. The sooner we start, the sooner we will be finished.  And this time we might really be finished; finished for good! What a fabulous thought.  IL-2 only helps 15 percent of the people who receive it. It only cures 5 percent. I am already one of the 15 percent.  I will be one of the 5 percent as well. And I will forever be so extremely thankful for this wonderful journey that has already given me so much love, so much friendship, so much understanding of myself and my life priorities. My priorities in life are my family and friends. Period. There have been moments when I have been terrified that I won’t see Kai grow up, that I will abandon him when he needs me the most. I have been devastated thinking about all the time with Jeff I might miss. I have been overwhelmed with guilt about the pain I might cause my parents. And I have wallowed in self-pity about the good times with friends that I might never have.  But never once have I worried that I may never have a house full of expensive things. Not one time did I grieve for the luxury cars I might not drive or the designer clothes I might never wear.  I haven’t spent any time worrying that my house wouldn’t be clean enough, that the chores wouldn’t all get done at the exact right time, or that I might not get a big enough bonus at work. None of that matters. It just doesn’t matter. The only things that matter are the love I share with my family and friends, the fabulous connections possible between others on similar journeys, and the overwhelming support that explodes from others when you share your journey (whatever that journey is) with them. So from this experience, I make these promises to my sweet baby Kai: I promise that I will never say to you “we’ll get to that tomorrow” unless I’m talking about cleaning your room or doing something similarly un-fun. I promise that I will always remember how important it is to seize the day and make the most of every minute, and that the most important aspect of each day is the amount of sheer joy you experience. I promise I will always have time for you no matter what else needs to be done; to listen to your stories, to help you, or just to play.  I promise you that you will always know just how much I love you and how important you are to me. And most importantly, I promise you that I will do my absolute best to ensure that you grow up experiencing life, appreciating life, and loving life.  I will pass on to you these fabulous gifts of love that others have given me.  And I will love you fully every day of my life.  Because of this journey, I think I will be a better mom than I may have been. And for that, I am thankful.

Like the previous times, I will try to post as often as possible over the next few days. Since the second round was so vastly different than the first, I have no idea what to expect this time. Fingers, toes, and eyes crossed for staying out of the ICU. Otherwise, bring it IL-2, I am ready for you my friend.

Today I am thankful for the comfort and familiarity of the Clinical Center; the treatment I will receive tomorrow, including the pain that will lead to my cure; the continued support of our amazing family and friends; and as always, my absolutely fabulous husband, Jeff (I promise to also love you fully every day of my life) and my precious baby Kai. I miss you with a tangible pain, my perfect little one. Please know that I will be back soon to feed you sweet potatoes.

April 4

It’s working!  The IL-2 is working! My original tumors have shrunk by 45 percent and there is no evidence of any other cancer anywhere! We went to NIH today to have scans (two CT scans of the chest and abdomen, and two MRIs of the abdomen and brain). About 30 minutes after we got home, Dr. Schaub called my cell phone. We weren’t expecting to find out the results until tomorrow, but Dr. Schaub called me personally to tell us the good news. It was such a wonderful surprise.  We expected to spend tonight full of anxiety over what we would learn at our appointment tomorrow. And instead it’s a fabulously joyful night filled with hope and thanks. I go back to NIH tomorrow for our appointment with the doctors and to be admitted. I begin treatment on Wednesday morning (first dose of IL-2 at 7:00am). It’s fantastic that we are starting the next round right away. But we thought we’d be starting at the end of the week at the earliest so tonight is a bit of a whirlwind of packing and getting everything ready for me to be gone for a week.  Thankfully my mom is already here and everything is in place for a smooth transition to treatment. I am so overwhelmingly thankful for this news. As much as I knew the IL-2 would work, there was statistically only a 15 percent chance it would, and while my heart remained positive my brain maintained a spec of realism. And now this extraordinary news not only gives me a sense of relief that is like the weight of 1,000 troubled lives flying free out of my soul, it also reinforces hope. I had hope throughout this fight and we won. I know that science played the lead role and the dedication of my doctors and nurses and NCI were what gave us the advantage. But I also know that I will carry this hope with me throughout the rest of my life and I will take it out and use it whenever I face a challenge. And when I do face future challenges, I will give hope a big hug and I will thank it for being there, and I will know that it played a big role in getting me to that future in the first place. And I’m not just talking about my own hope.  I’m talking about the amazing hope and support of all of our fabulous friends and loved ones.  I’m talking about every single one of our neighbors for the signs in their yards that literally screamed hope at me every time I went outside; I’m talking about the amazing support of our MMG family who spoke to me about when I would come back to work in almost every conversation never once even contemplating the idea that I might not come back; I’m talking about our fabulous family who remained positive at all times (at least to me, even though I’m sure there was some fear behind the scenes); I’m talking about our wonderful friends who have texted, e-mailed, called, and visited non-stop over the past few months; I’m talking about everyone who reads this blog in support and all of the uplifting, inspiring comments I continue to receive; and I’m talking about my fabulous care team at NCI who made curing me a priority and who see the value in my life for me, for Jeff, and for Kai. It was all of these hopes put together that has lead to this absolutely amazing news. I know this isn’t quite the end of my journey. I still have to do another course of IL-2 just like I did before. And IL-2 only has a 5 percent cure rate. I know there will be some part of me that lives in constant fear of the cancer spreading. But for now, this is the best news I could have hoped for. This is the news I have been crossing all of my fingers and toes to hear. This is the best result possible. And for that, I cannot even begin to express my thankfulness. I am thankful with every inch of my mind and body.  I am thankful with my life.

Tomorrow we got back to NIH for a 1:00 appointment and then I’ll be admitted. I will probably be in the hospital about a week again, just like last time, but it depends on how many doses I tolerate and how long it takes me to recover (I will then be home for about a week and then back in again for a second round).  Fingers crossed that a) I don’t end up in the ICU again, and b) I am lucky enough to have a private room again. I can’t wait to share my joy with the nurses. I have a feeling that they will almost as genuinely happy as we are. I will continue these postings through this next course of IL-2 and beyond. While this is fabulous news, the best news will come in the near future when we find out that the tumors are gone. And we will find out the tumors are gone, of that I am sure.

In other news, Kai started solids this week!  He had butternut squash today and yesterday, and ate it all both times. He’s getting so big (literally, he’s a little chunker now and I couldn’t be happier about that). Even though I know that this treatment is curing me, and I will embrace it like a long-lost best friend this time around, I am still sad to be away from my baby and just thinking about leaving him again tomorrow creates a lump in my throat that is difficult to swallow. But this time I know that I am trading 2 weeks away from him for a lifetime with him. And for that, I am so very thankful. Also, Jeff and I got to go away for his birthday celebration weekend this past weekend.  It was so much fun!  It was so fantastic to get that dedicated block of time just to hang out with my husband and have nothing but pure fun together. I love you, Jeff, with a love that grows every single day and will continue to do so forever.

Today I am thankful that the treatment is working. I embrace its physical pain in the knowledge that it is working for me and is my friend rather than my enemy. I go back in this time not with a fighter’s spirit as much as with a spirit of love and gratitude. If the IL-2 needs for me to be sick, then I will be so with a huge smile, because another month or two of feeling bad does not even begin to compare with the lifetime I will get in return. I am also thankful for the wonderful weekend with my husband; my fabulous doctors and nurses and NCI; all of the amazing support of our neighbors, MMG family, and friends; our fabulous family on whom we will need to lean again this month; and, as always, my extraordinarily wonderful husband (I’m sorry you have to go through this again sweet Jeff, but hopefully it will be the last time), and my perfect baby Kai. I will not leave you, my sweet baby. I will get to see you grow up. That’s what all of this is for and it is coming true.