Tuesday, December 31, 2013

auld lang syne

2013 is drawing to a close. I have been so contemplative today. I went back to work earlier this month, and it has been utter chaos. I am feeling much, much better, and stronger every day. I still have days that knock me down, and they surprise me. Anyone who knows me, knows I don't do well with limitations. So, I am learning. Learning to let go. Learning to let others bear some of the load for me. Which others did a lot of in 2013. I want to thank all of my readers, first of all. On the days I was feeling down or sad or angry, I came on here and was uplifted by your comments and views. Thank you for walking through this journey with me. Thank you to my husband and son, the best guys ever. I love you.

Thank you to the rest of my family, those of you who were there. I love you all too.

All day, I have been feeling the most amazing spectrum of emotions. I feel like I can't talk smack about 2013. After all, it brought me the most amazing gift I have ever been given, my son, Jack. It made me a mommy and it made me an orphan. It brought me to a new place in my relationship with my husband's family. My mother in law, Sandy and I became tied together by an invisible, unbreakable cord when she was in the room as my son took his first breath. With that first breath, that first beat of Jack's heart, we all became a little more complete. He is truly the best thing I have ever done.

This year made me stronger and it brought me literally to my knees with weakness. I broke into a million tiny pieces, and slowly began to piece them back together. I remember the days and weeks following my diagnosis where my husband and I would just look to each other and stare. We didn't know what was going to happen. I was so afraid I was going to die.

This year, this journey has taught me that no matter what I do, no matter what I say, and no matter who I am, my husband will continue to love me. Maybe I was afraid before that he was not, but I'm not anymore.

On my third wedding anniversary, bleary eyed and terrified, clutching my husbands hand, I met Doctor Sehbai. This began a relationship with the kindest, gentlest, most amazing physician I have ever known. His compassion and understanding, and the kind staff he is surrounded by made the process bearable. Some days, I even felt like I was having fun. If I had to have cancer to meet this amazing man, then I'm ok with that.

I lost all of my hair and got puffy and weird and my skin was red all over, and I felt like the ugliest person on earth, and realized that everyone I love still thought I was pretty on the inside, which is what matters most. Of course, thank you to those of you who lied to me and told me how pretty I still looked. Skin deep, indeed.

I met people online and in support groups where I shared things that, believe it or not, I was not even able to share with you. These women have lifted me up every single time I felt down. For that I am eternally grateful. Especially to Laura, Crystal and Emily, who feel like my soul sisters, thank you all for helping me not to feel so alone. Laura sent me a card every single week, and on the days when I could barely walk, I still made it to that damn mailbox to see the cards and letters that she (and many others) sent. It meant more to me than any of you could ever know.

I tried to reply to each and every one of you with holiday cards. If I missed you, please tell me in the comments or email me at kathleenkolkmann@gmail.com. Or find me on Facebook. I was too sick to respond to most everything this summer, but I am obsessive about correspondence and would love to share the card with you, even belated.

I reconnected with friends from home that were going through things that were even harder than what I was, and we found strength in each other. Here's looking at you, Melissa and Sabrina. Here's to Dan, whom I totally let down by not going to my high school reunion (mainly because I could not get drunk, as I was pregnant,) who shaved his head on a whim after seeing my YouTube video while sitting in traffic. Hometown love... Buffalove.

I turned thirty and felt grateful for every breath of air I have been allowed to take. In the words of Sara Bareilles: "and the gift of my heartbeat sounds like a symphony." I stopped taking everything - stopped taking anything for granted and learned to start living again now. But I also learned that its ok to simply try again tomorrow. I see so much love and promise in the eyes of my son and I can't wait for the rest of my life.

I learned more about myself in this past year than I did in the entire 29 years I spent on this earth before Jack and my choriocarcinoma. And I would not change one single thing. I would walk through hell and back a million times to see this little boy smile just once.

Early in my journey, I was having a conversation with my brother. He told me that by the time this year was over, I was going to have had a brand new baby, and beaten cancer's ass. He said that I would look back on this, and look to others and say, well, what did you do with your life this year?

And he was right. 

Bring it, 2014! 

Friday, December 6, 2013

Life "after" the big C

Life after cancer will never be the same as it was before. I have spoken to a few survivors, and their post-cancer thoughts and experiences all vary wildly. I have one friend who told me that she feels like there will be a "black cloud," hovering over her for the rest of her life. I met a woman at a wedding this summer whom I could only describe as a stone cold bad ass, breast cancer survivor. She said that ever since she beat cancer, she wonders, "whats going to get me next?" She said that when she goes to the doctor, she is filled with dread, and yet, she continues to live life to the fullest and embrace it. I "met" a young lady who had the same cancer as I did on social networking. She told me that, post treatment, she feels ugly, depressed, and not the same. Me, personally? I've been riding the denial express for about 8 straight months. In case you couldn't tell by my rapid decline in blogging, then my all-out avoidance for the past month or so. It is almost as if, during treatment, you have this amazing defense mechanism in your psyche. This, at least in my case, causes you to develop the personality of a fighter. To adopt the mentality that what is happening to you is ok, you have no control over it, but that you have the ability to be cheerful while it is happening. There are two people I have met, one, a volunteer at the cancer center, and another a reporter who interviewed me about placental disease; both have called me "the world's happiest cancer patient." If only they knew what happens in the dark corners of my mind. Or how I treated my husband some days, when I was dealing with the worst of it. I am not the worlds happiest cancer patient, and I am not as strong as some of you may think. That does not mean that I am not strong. It turns out, I have my own inner "stone cold bad ass," and she is pretty epic. But I am also human. I fail. I make mistakes. I say things to the people I love that I do not mean. It feels good to get that out. After treatment, everything changed. Suddenly, I felt like it was finally real. I was terrified to stop chemo, knowing that the cancer would come back. Not that it might, but feeling, knowing inside that it would. Thankfully, it hasn't. I started mouring things that I had lost. I got weepy when I saw things on social networking or online about breastfeeding. I started to feel angry; really fucking angry. I started to grieve because I was robbed of the normal postpartum experience. And worst of all, I did not start to feel better. Sure, my hair has grown 1/4 inch. But strangers still stare. And since my last treatment on October 15, I have had some really, seriously, amazing days. But a lot of days I still feel sick. A lot of days, I continue to be frustrated by my limitations. It is still difficult for me to climb stairs. I am ready for bed at 2 pm, no matter how much I slept the night before. No amount of caffeine helps with this. In the first few weeks I struggled with worsening nausea and vomiting, and continued to use anti-emetics to deal with this. That frustrasted me. I kept thinking to myself, I thought I was DONE. Worst of all, my number climbed. Although it never went above 5, it was slowly but surely rising for about 3 weeks. I was so scared. And yet, because I was done, because I was cured, I did not reach out for help. I did not come on here and share with you, dear readers, my fear, anxiety and apprehension about life after cancer. For that, I apologize. My number has since declined, and is down to .8 as of my last blood draw. Now this, I have to share. I found out about that beta hCg because my amazing, dedicated doctor texted it to me. He had left work for the day, was feeling sick, and yet, out of curiosity, checked my number. When he saw it was .8, he let me know and Jim and I celebrated by dancing and high-fiving in the kitchen. Jack supervised from his high chair. I want to share with you something my husband read in a magazine and cut out for me. It was found in Backpacker magazine, and it written by Casey Lyons. I removed a small excerpt from it, but here is most of it: 
 survival, defined 
I once knew a guy, an inexperienced hiker, who went out for an overnight on the Appalachian Trail, got left behind by his hiking buddy, and panicked. A trail-runner found him 15 minutes later, broken, blubbering, and gearless on a blue-blaze trail. He ditched his pack because he thought it would slow his escape. He was crying because he wasn't ready to die. That's not survival. Sprained your ankle and forced to hobble out using a tree branch for a crutch? That's not survival either. That's a mishap, a blip, a frightening but ultimately funny story.So what is survival? Here's an easy baseline: You'll know it when you're eating the weakest sled dog. In a survival situation, if you come back at all, you come back without something dear to you. Maybe it's a finger, or a friend, but more likely something that was once glued to your psyche, so close you never realized it was there: The belief that the world is forever filled with warm beds, warm partners, and happy endings for all the pretty-much good enough people like you. Survival changes that. It cleaves your life into two: before it happened and after it happened. And in the middle is a gigantic monument that casts a shadow from which you may never emerge. You'll know survival is at stake when you ifnd your faith. Then lose your fiath. Then come to a haunting realization: You are going to die. You might live yet, thanks to luck or skill or probably both, but you will stare your own mortality ub uts oake and hollowed-out face, and if that image doesn't stalk you by day, you can count on seeing it in your dreams. Such life-or-death situations can materialize out of the night and set upon you. If you're still not sizing up the sled dogs or family pet, don't worry: You'll know what's at stake when you realize that the wolrd, with all its near-infinite beauty, doesn't give a damn about your good times, your feelings, or your sense of fairness. Of course, you've always known that- in an airy, detached sort of way- because you've heard about it happening to other people and you've thought to yourself "I'm too smart/prepared/careful for that." But now, for the first time ever, you'll feel it-subtle as a rasping and unanswered scream for help- right down into your bone marrow. That is survival. May you never know it.

I have never before read something that I identified with quite so powerfully. The author was able to sum up my feelings far better than I could at the time.