Monday, March 28, 2011

March 28

Poor Jeff either ate something bad or caught some sort of stomach bug and was sick his entire birthday weekend. He’s on the mend now so that’s good.  But we didn’t get to celebrate his birthday; we didn’t go out and he didn’t even open his presents until the next day. We’re going to try for next weekend – hopefully that will work out. If not, then we’ll have to wait until sometime in May.  So fingers crossed for next weekend. We’ve just been lying low this week. Kai seems to be completely over his cold and Jeff is getting over it as well. We mainly just hung around the house, although the weather was gorgeous and Kai and I got in some good walks. I feel like there’s so much I need to get done before I start treatment again, and I don’t feel like I’m making any progress. It’s difficult to be overly productive with a baby at home (and I’d rather play with him anyway). One of the things I have to do is make baby food for Kai. He’s about ready to start solids – exciting! I’m sure he’d be happy to eat as soon as I get around to making it. First up are squash, carrots, and sweet potatoes. If I can get all of them puréed and frozen before I go back in the hospital, I will consider it a success.

We go back to NCI for the scan in exactly one week. It feels like I have so little time left at home before we start all over again. As the time home becomes less and less, my anxiety becomes greater and greater. I am anxious to find out the results of the scan. But even more so, I am anxious about doing treatment again. Neither option (a repeat of the IL-2, or the TIL cell treatment) is easy and now that I’m feeling much better since the first round, knowing that I’ll have to start all over again fills me with dread. But if it is the IL-2 again, then I’ll be extremely thankful that I may only have to do one more round of treatment before I’m cured. And if it’s the TIL cell treatment, then I’ll be extremely thankful that I’m getting the treatment with the current highest cure rate (it has a 15% cure rate, and a 50 – 75% response rate depending on which steps are involved in the treatment). So either way, I’ll be happy about my options (although of course the scan will show that the IL-2 is working, so we’ll just do that again). It’s not that I won’t be thankful, it’s just that it’s so difficult and inside my head I am having a knock-down, full-on temper tantrum about doing it again. But we all do what we have to do. We all power through each of life’s unique challenges. And, in this case, the reward on the other side will be worth a million times the suffering that I will have to endure. In the meantime, while we wait for next Monday to arrive, the stress of the situation is starting to take over. I am filled with fear most of the time; not a tangible fear of the results, just a general fear. I hear noises in the house. I double-check the locks constantly. I check on Kai multiple times each night. The nightmares have started again. And I see dark shadows moving out of the corners of my eyes; like there’s something waiting outside to come in and get me as soon as I let my guard down. I don’t know if these are leftover effects of the IL-2, or if it’s a manifestation of the anxiety that I try so desperately ignore. Hopefully everything will be better after we find out the results of the scan. At least then we’ll know what’s going to happen next; it won’t be a great unknown. And we’ll get started on the next treatment, making us one huge step closer to the cure. I guess the unknown is the scariest part of all. That and also this time I know what the treatment entails. There was something nice about going in blind last time, ready for anything. But this time, if we do the IL-2 again (when we do the IL-2 again), I will know it is working and I will embrace it as my saving grace. I am in a fabulous place. I have every option still available to me. When I go back to the Clinical Center, I will be going back to the loving and dedicated arms of my cure team. And for all of that, I am thankful. And I will continue to fight as if my life depended on it, because, in fact, it does.

As I said, I’ve mainly been hanging out at home, enjoying time with Kai and some visits from friends. Kai continues to be his amazing, sweet self and is laughing more and more now that he’s over his cold. I know I haven’t been updating this as frequently as usual during this month at home, but I will pick up the posts again as the time to begin treatment (i.e. when I will have more to report) draws nearer. For the next week, I plan to continue to enjoy my time at home, and hopefully cross some things of off my to-do list. I’m also hoping for Jeff’s birthday celebration weekend to happen this coming weekend, because one night of fun without responsibility would be just what the doctor ordered for both of us before treatment begins again (and by “the doctor” I mean “me” unless I could get an official prescription from Dr. Schaub).

Today I am thankful for visits from Laura, Lynn and Kate, and Jessica and Addelyn; a much-needed GNO this coming Thursday; the fact that I still have a whole week a home until we find out the next steps (and even longer until treatment actually begins); all of this extra time I’m getting to spend with baby Kai (when he otherwise would have been in daycare while I was back at work); the two promising treatments that represent my next steps; the continued support of our fabulous neighbors and MMG family; all of our amazing friends and family; and, as always, my fabulous husband Jeff (we’ll celebrate double this weekend) and my perfect baby Kai. For now we won’t talk about being apart again, my sweetheart. It’s the one aspect that I cannot let myself think about just yet.

Monday, March 21, 2011

March 21

The days are going by so quickly.  I had forgotten how quickly each day passes when it’s just me and Kai at home. I think about doing something and then all of a sudden it’s 3 days latter. I’m feeling a lot better and these few weeks in between treatments have been absolutely fantastic – soul cleansing and heart warming. I’ve been feeling like my regular self, not like my cancer self. Although the time until we go back is getting shorter and I feel my cancer self starting to creep back in. Over this past week, we’ve been enjoying time at home and visiting with friends. We took Kai to his first party: an annual St. Patrick’s Day super party at our good friends’ house. Kai had a fabulous time (mostly he slept in his car seat). Other firsts for Kai include learning to blow kisses (adorable) and his first yoga class.  The kisses are fun, but I think the yoga may have been overwhelming. There were about 15 moms and babies there, ranging in ages from 8 weeks to 9 months. Every time one of the babies started crying, Kai cried in sympathy. It was simultaneously sweet and heartbreaking. I think he’s going to be a sensitive guy, which will hopefully serve him well. He is almost completely over his cold from last week. He is still a little congested, but that’s about all. He is eating and sleeping again like a champ. And for that, we are all very thankful.

Jeff’s birthday is this week and to celebrate we are going away overnight on Saturday. We’re going out to dinner and then staying at a hotel in D.C. It will be our first time just the two of us for more than just a couple of hours in the past 5 months (excluding time in the hospital because I don’t believe that counts). My mom and step-dad are coming down to stay with Kai. I am very thankful for that; I’m really looking forward to this time with my husband. Plus, with everything he has been doing – taking care of me and of Kai and working - he deserves a wonderful birthday. Poor Jeff caught Kai’s cold so we have fingers and toes crossed that he is better by this weekend.

As the time until we go back for the scan approaches, I am starting to get more anxious. What seemed like a long time at home, now feels like only a very brief respite. As much as I am looking forward to hearing that the IL-2 is working, I do not want to do it again. Of course I will do it again. I will be extremely thankful for its cure and I will bear its challenges with a smile knowing it is giving me back my life. But knowing all that it entails causes me to look forward to it with a smile in my heart and a pit of dread in my stomach. However, I am very much looking forward to the scan and the appointment with Dr. Schaub to find out the results. I know that hearing him say, “It’s working!” will cause the sweetest, most burden-lifting, relief-filled, joyful explosion of gratitude I have ever felt. And I am looking forward to reveling in that moment.

I don’t have a lot to report this week. My days right now are like the days of any other stay-at-home mom with a baby. We play, we eat, we nap, and we hang out with friends. We cherish every cuddle, every smile, every laugh, and every new discovery. We see the world for the beautiful wonder that it is and are delighted by each new day. We remember how very fortunate we are and take time to think about others, like so many in Japan, who are suffering far worse than we ever will. And most importantly, we live, we just live. And for that, I could not be more thankful.

Today I am thankful for a long visit from Uncle Bruce on Thursday; a fun day with Renee, Helena, and Thatcher on Friday; a fabulous St. Patrick’s Day party at Mike’s and Elizabeth’s house; a fantastic weekend visit from Jean; numerous fun visits from Linda; the beautiful weather that has allowed us to be outside each day and see all of our wonderful neighbors; the first day of Spring and the new life it brings; all of our amazing family and friends; and as always, my extraordinary husband, Jeff, and my most perfect baby Kai. I continue to be amazed by your determination, your strength, and your sweet disposition, little one. Thank you for spending this time with me. Above all, I am thankful for you.

Sunday, March 13, 2011

March 13

My poor sweet baby is sick. He has his first cold, in his chest and his head. He’s not eating much, which means he’s not sleeping well at night, and he cries when he coughs.  But we’re on day 5, so hopefully he’ll start feeling better soon. I have no idea where he got it; he hardly leaves the house.We’ve been so careful with him to keep him from getting sick.  But he turned 5 months old today, so I guess I should be glad we made it this long. I cannot protect him forever (although I’m sure I will try).
I know it’s been a while since my last post. I had a few reasons/excuses. The baby is sick and we’re just hanging around the house getting back in the groove of family life. I was worried that I didn’t have anything good to say and would just waste everyone’s time reading this. But last night I realized that I was making up these excuses. I realized last night that the reason I haven’t posted in so long is that I have been trying to hide from the cancer. April 4th (when I go back to NCI for the CT scan to see if the IL-2 is working) seems so far away. Even though it’s only a few weeks, because it’s not until April it seems like I have a long time at home. And during this time, I just wanted to be a mother, a wife, a friend, a daughter, a neighbor, a coworker. I was pushing away the woman with cancer. But I can’t hide from it. It’s not that easy.  Right now I am the mother, wife, friend, daughter, neighbor, coworker with cancer. No amount of ignoring it is going to make it go away. It’s an unsettling place to be: I am either almost finished with my treatment or we are just beginning what could be a long journey to the cure. And those two scenarios are so different from each other that I feel like I am existing in an alternate time – a limbo where the days go by, but time is standing still. My life outside of our house is on pause. I live inside these walls and the rest of the world goes on outside and I do not feel like I am part of it. I know I will rejoin it, of that I am sure, but right now I am separate from it. All of my plans revolve around what will happen next with treatment. I can only make plans until April 4th, because I have no idea what my life is going to be like after that. It’s an odd feeling, like living in a bubble of sorts, floating within the rest of the world without really being a part of it. But I have to embrace this cancer if I am going to beat it. So I am out of hiding, I accept the situation, and I will overcome it – maybe even as quickly as next month. And for now, I enjoy each day at home with my precious baby, my wonderful husband, and all of the amazing family and friends who are visiting us.  And for that I am thankful.
If I were to live a million years and say “thank you” every minute of every day, I would still not be able to properly express the immense gratitude I have for all of the support and love we continue to receive. All of the melanoma support signs are still up in our neighborhood and our fabulous neighbors constantly offer their help; the melanoma walk and fundraising efforts continue to increase every day (I need to make a correction to my earlier posts, the walk/fundraising supports the Melanoma International Foundation not the Melanoma Research Foundation); we continue to receive extremely generous deliveries of food and other wonderful gifts of support from our MMG family every Monday and Thursday; I continue to receive encouraging cards and extremely thoughtful gifts in the mail; others are sharing their personal stories with us; and the messages of support via e-mail, Facebook, and phone just keep coming.  To say I am surprised by the level of support we are receiving would be a gross understatement.  I had no idea I would be encased in this much love. I will never forget how important this has been to me – how it is the safety net hanging under this tightrope, ready to catch me if I fall and offering a confidence that allows me to take each step forward until I reach the other side. I vow to spend the rest of my life trying to live up to the generosity I am now receiving. I will be there for others as others are there for me now. I will be a good friend, a good neighbor, a good daughter, a good wife. I will love. I will just love. And I will act on that love. I will not be too busy, too tired, too far away. I will be there.  I think that the most important lesson I have learned on this journey so far is how positively people respond when you allow them to share your journeys with you. I have always been open with the details of my life, but I also have a tendency to be closed off to help or to what I would consider to be an inconvenience to others.  But I am learning that the most important part of life is raw human connection. And if you are open to that and if you actively encourage it, then it is truly amazing how deep your relationships with others can become and how far your reach can extend.  People want to be part of other people’s lives, of other people’s joys, of other people’s struggles. Because of this, cancer has become a wonderful gift rather than a terrifying struggle.  And for that, I am more thankful than I can possibly express.
Over the past week, we have mainly been at home. My mom left on Wednesday so we are settling back into our three-person family routine. As I said, baby Kai has been sick, so most of our efforts are going towards caring for him. I still have about 3 weeks at home until we start again and I will enjoy that time seeing friends and celebrating life with Jeff. Today I am thankful for  a wonderful dinner with friends this past Tuesday where we ended up laughing for hours – even baby Kai laughed, it’s his new development, and it’s the most wonderful sound in the world; a visit from my dad and step-mom this weekend, even though Kai was sick, he had a fabulous time with his Grammy and Pop; a visit from my wonderful friend Sarah on Saturday (and the whoopee pies and chocolate peanut butter eggs she brought: you can take the girl out of PA, but you can never take PA out of the girl); a brief visit from our neighbor Susan (the amazing woman who created the support signs that cover our street); a visit and basket of goodies from our neighbors Rob and Neil; Kristen’s beautiful new baby girl, Emelie; our fabulous MMG family; all of our amazing friends and family; and, as always, my sweet sweet Jeff and perfect baby Kai. You will feel better soon, my love. Until then we will hold you tight and swaddle you in a cozy soft blanket of love.

Sunday, March 6, 2011

March 6

I know it’s been a few days since my last post, but this is a slow time, a quiet time, a healing time. I’ve been at home with Jeff, baby Kai, and my mom, regaining strength and getting back to “normal.” Poor baby Kai has a rash all over his face and body, and hasn’t been his same smiley self for a past few days. We took him to the pediatrician who advised it to be eczema as an allergic reaction to something. He said to use cream for his skin and give him Benedryl for itching. It doesn’t seem to be getting better though, so we may go back to the doctor tomorrow for a second opinion.  Otherwise, we’ve been enjoying our time at home and have had a couple of very fun visits.  Yesterday, Jeff’s cousins’ family, who have a baby girl who is one day older than Kai (as well as just about the cutest 2-year old you’ll ever see),  came for the day. We had a lot of fun with them, lots of excitement in the house, which baby Kai loves. Today, my friend, Dana, came for the day and we had a wonderful visit with her too. We have several visits lined up for this month, which is fabulous. It’s wonderful to get to use this time to see people we love, and fill the house with happiness and reconnection.  But in general, it’s business as usual as usual can be. Jeff is going in to the office this coming week (he’s been working mainly from home recently), so it will be almost like it was at the end of maternity leave (which, instead of ending, just extended itself into cancer leave). Right now, my mom is planning to stay until the middle of the week.  After that, Kai and I will be home alone when Jeff is at work. I think we are ready, but it’s so nice having my mom here as extra help. We’ve gotten so used to having extra hands here with us; it will be strange to be alone in the house again. Either my mom or Jeff’s parents have been staying with us since the end of January – we’re going to have to adjust to it being just the three of us again. But I’m sure we’ll find our groove quickly.
Two fabulous things have happened recently. First, friends from Wilson (high school) are organizing a team to walk at the Melanoma Walk at Villanova in April. The organizer, Karin, told me that they’ve already raised $500 for the Melanoma Research Foundation!  That’s fantastic! Also, the health teacher from Wilson contacted Karin (who is a nurse) and asked her to come in and speak to the class about the importance of sun safety.  This makes me so incredibly happy. People don’t understand what melanoma is. They don’t understand that a form of skin cancer can be deadly. Even the person processing my long-term disability claim asked me to clarify that I had melanoma and to explain to him how skin cancer could have gotten inside my body. And now Karin has the opportunity to tell kids just how important it is to use sunblock and practice conscientious safe sun behavior. I sincerely hope everyone who knows my story uses sunblock every day. I hope reading about my treatment at least provides some incentive to cover up and stay in the shade. And I hope nobody reading this will ever even consider using a tanning bed. Now we have the chance to educate others about the importance of sun safety.  Karin gets to do it directly in front of a health class. But we can all do with the people we love. Using sunblock is such an easy thing to do, and it could save your life. Another great thing is that my nieces, Chloe and Jordan, had a hot chocolate stand and asked if they could donate the money to help me. They are going to donate it to research. It has been amazing to me how quickly and how fully people have embraced this cause. I am awed by the generous, giving nature of people and their immediate desire to help in any way possible. I am overcome by the goodness of people. I am humbled by the inane generosity of others. I am encased in a brother-and sisterhood, held tight by love and goodwill. I am so thankful for the opportunity to experience this raw, real, sincere humanity.  Once we beat this cancer, the pain of the treatments will definitely be worth the love and beauty I’ve been shown. Every time I hurt, every time I feel sick, every time I am sad, I am met with pure love and support that is far stronger than cancer could ever be. It’s like people have banded together to beat this cancer with me, and not just for me, but in a greater sense through fundraising, awareness building, and education. And for this, I am truly thankful.
Today I am thankful for fabulous visits from our cousins and Dana; the continued support of MMG and the extremely generous care packages and gifts that we continue to receive regularly; everyone who is involved in or has donated to the Melanoma walk (; everyone who is spreading the word about the importance of sun safety; my amazing family and friends; and, as always, my fabulous husband Jeff and perfect baby Kai. I hope you feel better soon, my love, but in the meantime I will itch right along with you.

Wednesday, March 2, 2011

March 2

Recovery is slower this time. I feel like I was much more active by this point last time. We did manage a short walk today, which is great because the weather is gorgeous and it’s good for the baby to be outside.  It’s really been very considerate of the weather to be so nice while I’m home and save the dreary, cold, snowy days for when I’m in the hospital. The sunshine and warmer weather does a lot to lift spirits and reinforce positivity, and for that I am thankful. Basically I’m just very tired and insanely itchy with my skin peeling off of my face, neck, chest, and back. Otherwise all is well and I’m glad to have this time at home. Waiting for a month to find out if the IL-2 is working is going to be difficult. I’d much rather know right now.  I’m trying to cherish this time of healing and not wish it away to be closer to finding out the results.  As I have said, I am not a patient person.  But as they say: good things come to those who wait. So wait I will, and I will be confident in the good news we are about to receive. I am still convinced that the scan is going to show that the tumors have completely disappeared. I know statistics scream otherwise, but I’m not a statistic, I am a person, I am a warrior, I am a determined mother. Cancer, you may prove a worthy opponent, but you are no match for me.
I have put away all of my parenting books (and if you know me, you can guess there is a substantial amount). If I am a unique person who isn’t going to go by the books, then so is baby Kai. Goodbye scheduling feeding times, goodbye stringent rules about naptime, goodbye always putting the baby down before he’s asleep, goodbye not rocking the baby to bed, goodbye everything except enormous Kai smiles and the overall happiness of my little person. I don’t care if you need to be rocked to sleep every night for the next few months. I don’t care if you use a pacifier until you’re 2 years old. I don’t care if you nap in your swing or your crib. I care that you turn into a happy, content, confident, secure individual and I will use your smiles, not the clock, as my gauge of success.  If I put as much weight on melanoma statistics as I was putting on child development statistics (by month 1 80 percent of babies will be…  by month 2 80 percent of babies will be…), then  I would have a much more difficult time getting out of bed each morning. I wouldn’t be able to greet each day with the confidence that my body is unique and as such is waging a war that you will not find in any medical journal, personal story, or research statistic. So as I attend to my own unique needs, I promise to do the same for baby Kai. I will listen to your unique wants and desires. I will respond to you as a little person, not as a developmental stage, and I will remember that your life cannot be defined by a book or a statistic.  And I will stockpile each huge, toothless, ear-to-ear smile to be used in my assault against melanoma. Your love is my greatest weapon of all.
I am learning how to breathe on this journey. I am learning to stop, take a deep breath, and relook at the situation.  I am learning to relax, let things go, and be more flexible. I am allowing for setbacks, for last-minute schedule changes, for improvisation.  I look forward to the uniqueness of each day, the joy of impromptu occurrences, and the promise of tomorrow. I am learning to see life as a marvelous roller coaster that I cannot always control, or plan for, or contain.  I am learning to be swept up and carried along, sometimes with a paddle and sometimes without, and either way with a great big smile on my face for the awesomeness of the ride. I am learning to sit still until everything falls away and only love remains. I am thankful for this breathing lesson, because I have a tendency to suffocate myself.
Today I am thankful for the gorgeous weather; the continued, humbling support of our wonderful neighbors; upcoming visits from friends; my time at home with baby Kai; my mom for taking care of all of us; my loving MMG family; the doctors who continue to grow my cells while I rest; my amazing family and friends; and, as always, my fabulous husband Jeff, who is stuck with all of the night feedings this week, and my precious baby Kai. The debt I owe you can only be repaid with my life, and I promise you now that I will always be in yours.