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.


  1. Glad to read a post again. Can't imagine the ups and downs you are going through, but do understand them from my own experiences. You hang in there, young lady. You will see April fourth very soon. From there you will move forth in a positive manner. God bless you and yours.


  2. Hey Jamie,
    So good to hear from you! Up front, I have no idea what you are going through. I am choosing to imagine that the ups and downs you are experiencing are creating a healthy balance for your mind which in turn is making you stronger. Sounds like you have an above average grip on what's helpful.
    My prayers give me moments to picture you healing and simply enjoying Jeff and Kai. I'm sure Kai will be well soon. Sounds like you are second to none as a Mom too. Enjoy all of these dear moments as well as you can. :-)
    Now... whoopie pies and peanut butter eggs! Yummmmm! Throw in some pigs feet jelly and scrapple and you've got yourself a full blown all out down home PA dutch partaaaaae!! I can have those items sent to you ASAP, just say the word!
    As always, lots of hugs and love. ~Judy

  3. Those little guys are germ vectors - if there is a germ nearby, they will find it! Just think that every bug he gets just makes his immune system stronger! And when he gets a little older, you won't mind the occasional cold b/c he'll be a little more snugly than usual - no matter how independent he tries to be, he'll still want comfort when he's sick.

    Try to enjoy this peaceful time at home - since the scan is going to show that you are completely clean, you'll probably have to jump right back into your normal routine!

  4. Thank you for the update. We missed you, but I knew you were spending time with your family just as it should be.

    I was born in April and always feel April is the month of good things so I feel very positive about April 4th.

    Love to all of you

  5. My fiend just finished second round of IL2 last week. He's spirits mirror yours. We have appreciated your words of advice. We all hope and pray for the best for you on April 4!

  6. Dear Jamie, I am a church friend of your mother and Bill. Even though you and I have never met I surely feel as though I've known you for a long time.Your mom emails me updates regularly and then there is your blog.WOW!I've learned what a brave and determined young mother you are.Your writings are wonderful.I'm sure you have helped many others.Know that MANY of us are praying for you, your entire family, and your doctors and nurses.Tina

  7. Re Kai and the Big Bad Cold: Katie Russo is right. My mom always said that when she told the pediatrician that she boiled practically everything I came in contact with, his reaction was: "What are you trying to do to that child?" Their little bodies need to learn to fight all kinds of germs, and this is just a new skill for him--although I admit not as much fun as smiling or sitting up! You may be the only mom in the history of the universe who has been able to enjoy every minute of her child's life while he is cranky and miserable. Hang tough and enjoy this time of peace. And April will come, bringing spring and joy.

  8. So happy to see another post from you. I've been periodically checking in.

    I do understand your thoughts on wanting to hide from cancer -- I feel that way myself as a caregiver. It certainly turns your life and thoughts upside down but I see that you are also gaining the blessings of it as well. I'm happy that you are allowing others to do for you. It warms their hearts, I'm sure.

    Hopefully baby Kai will feel better soon!

    Thoughts and prayers are with you.


  9. Hey,

    Baby giggles are the best. I cannot imagine the level of cabin fever you are feeling. The frustration must be monumental. I dunno if anyone has told you this yet, but I know I always need to hear it when dealing with serious medical stuff, especially down the stretch. This isn't your fault. This isn't some disconnected punishment sent down from God knows where. Sometimes things just happen for no reason at all. Keep your head up, keep doing what you are doing, and enjoy those baby giggles!



  10. Melonomamom,

    Keep your spirits high. Be thankful for every day you have with your baby and husband. I hope good news comes to you in April. We are praying for you. I will continue to follow your journey through this troubled time.

    A friend you have not met yet.