Tuesday, May 17, 2011

When Harmony found me in the giant world of cyberspace I was astounded for not only did we share a cholangiocarcinoma diagnosis but we were only a couple years apart in age (Harmony being about a year and a half younger than me) and we both had a young child. I can't even begin to tell you the astronomical odds that we overcame when Harmony found me, this is a rare cancer and it is even rarer among young women, it truly was a miracle. Harmony and I struck up a friendship fast, both of us eager to have someone who really understands what we are going through we would sometimes trade e-mails multiple times in one day. And though we never actually met each other, Harmony and I became sisters in our fight against this rare and horrible cancer.

Just recently, my dear friend Harmony passed away after courageously battling for 19 months. I am heartbroken. I have no words when people ask me about it, I haven't even allowed myself to think too long about it because I just cry. I know that I never physically met Harmony but we were friends none the less. We shared a bond that is unlike any other I have ever known. When I would talk to Harmony about how I felt or about a treatment I had, she was the only person, that I knew, who could truly say she understood. I could say that my liver hurt (and really, who says that?) and Harmony would know exactly the ache I was talking about. When I needed a cheerleader, Harmony was there. I miss her. I have such wonderful family and friends, and for that I am grateful, but there was no one in my life like Harmony.

Harmony was married to her best friend, Lee, and they have a beautiful little boy named Blane who is 5 years old. Thinking about Blane without his beautiful mommy is overwhelmingly sad for me. It literally makes my heart ache. I know how very much Harmony loved her little boy and that kind of love lives on beyond death. I pray that Blane will always feel Harmony's love for him and that that love and the love of the rest of his family carries him through his rainiest days. I pray too for Harmony's husband, parents, and whole family, the loss of Harmony is overwhelming for me, how much more so must it be for them.

Over the past few years I have lost more than a few, too many, friends to cancer but the loss of Harmony hurts in a way that I find difficult to explain. Harmony had the same cancer that I do and thinking about that just makes me cry. But my tears are not ones born from thinking "that could have been me", no, they are more tears of frustration and not understanding. They are tears of having gone from having a "sister" in this battle who really understands, to feeling more alone than I ever have. There is a Harmony shaped hole in my heart that will never be able to be filled by anyone else. I don't understand and I miss my sister more than words can tell.

Harmony has given me gifts though that not even death can take away from me. No matter what she was going through or how bad she felt, Harmony always had words of encouragement for me. She was ever optimistic, hopeful, and found joy in everything and I found that to be contagious. And the love that Harmony had for her family, for her friends, and for me will stay with me always.

I know that I will feel the loss of my dear friend always, but my memories of Harmony are mine forever and her hope and love are a raft keeping me afloat on the rainiest days when the flood of loss threatens to overwhelm me.

Monday, May 2, 2011

Throughout this whole cancer experience my daughter, Kylynn, has remained pretty unflappable and amazingly strong. She has, for the most part, not been overly plagued by fear and worry and for that I am so grateful. Sure she has had some rough patches, but in the grand scheme of things, Kylynn has weathered all of this cancer crap very well. One might think that she has done well because she isn't really aware of my whole situation, but that isn't the case. Kylynn is a very intelligent and inquisitive little girl and there isn't much about my cancer that we have kept from her or could keep from her even if we wanted to. She, from the beginning, has wanted to know everything right down to what color tumors are, saying that she feels more confident about the situation if she knows what is going on. So we have done our best to keep Kylynn informed as best we can while trying to stress our confidence in God and in my doctors. And, overall, it has worked well for us all. But every now and then I think reality catches up with Kylynn, as it does with me sometimes, and for such a young girl it must seem even more monstrous and overwhelming than it does for me.

On Friday this week I will be back up at Mayo having a surgery to burn three tumors out of my liver. I have had this procedure done at least four other times in the past and Kylynn has barely batted an eyelash. Tonight, however, she was all questions and worry. She wanted to know everything about how the procedure was done and was very concerned about exactly how the doctors knew where the tumors were and how they knew they were burning the right parts of my liver. I explained how good my doctors are and how they are the same doctors that have done this procedure on me four times before with excellent results and I explained about the equipment that the doctors use. I thought we were doing okay but then Kylynn looked up at me with her lip trembling and her eyes full of tears and said, "But it's hard to trust those doctors, Mommy, I just don't know them." And so we had a tearful discussion about faith and trust but I do not feel at all like I reassured my baby much. I wanted so much to just tell her that it was all going to be okay because I so much want that to be true, but I know how empty and not reassuring that sounds when I am told that. I don't know if everything is going to be okay, I, myself, worry all the time that things are not going to be okay. So the best I could do was hold my crying child and tell her how very much I love her. And though that is a lot, it feels woefully inadequate in the enormity of the situation.

Kylynn's second worry of the evening was her overwhelming worry. She wanted to know what she should do if she started crying tomorrow at school because she was so worried. She asked if other kids cried because they were worried about stuff like this. She worried that her friends wouldn't understand why she was so upset and worried. We addressed all these concerns but what breaks my heart is that she should have to have these concerns at all. She's not even seven years old yet, this is a lot to ask a child to carry.

It has been a long evening with my little girl but she is finally curled up asleep next to me as I type this. Our prayers tonight have been for trust and understanding, for courage and faith, and for peace in the belief that love is forever, even beyond our rainiest day.