Changing the World in Yesterday's Makeup

I’ve decided that the title of my memoir will be “Changing the World in Yesterday’s Makeup”. Nothing profound there…it just so exemplifies the status of my life these days. So much to do and so little time. Never enough time to spend with my sister and my precious niece and nephews. Never enough time on my horse. Never enough time to say the thousands of thank-yous that need to be said in a personal and meaningful way. The thing about living with the OC—and especially in the last month as I have had to wake up every morning and really confront the reality that for each one of us, our days are numbered—is that life both speeds up and slows down. On the one hand, there is so much still to do. Life is frenetic—every hour spent sleeping is an hour not spent having one last chance to do one last amazing thing. If nothing else, the last seven years have given me the most amazing appreciation for the beauty of every single moment. That is a priceless gift that I would not trade. Having said that, I often ask God if there isn’t an easier way to that realization. Why does it take such a keen awareness of running out of time to make you value it so much? And yet, as my life is racing ahead and I am frantically cramming experience after experience into it, things are also slowing down. I am making peace. And that, as odd as it sounds, is an eerie feeling. There’s almost a resignation to it that my head is finding hard to accept. Saying “I love yous”, saying “goodbyes”, prioritizing what I want to see one last time. There’s a beauty in it because it is so intentional, so deliberate. What a blessing to be able to truly say, “I have righted my wrongs. I have my faced my fears. I have let those who matter know that they matter.” But it also sort-of takes the mystery out of wondering what comes next. In my heart, I’ve still got a cabin in Alaska calling my name for a year or two. I’m still waiting to get picked to work at McMurdo Bay in Antarctica. My soulmate is still out there and we still need to join the Peace Corp and learn to speak Spanish. But then, there is so much to leave behind and so little chance to wake up surrounded by the ones I love, in the town I love, doing work for people I love. These, my friends, are the questions that we would all be asking if we started living as if our days were numbered. These are the questions that really can’t be answered because the point is really just in the asking. And so, for now, I won’t slow down long enough to wash my face before my head hits the pillow each night. That is one thing I can control—I can decide to forego skincare for ten more minutes of soaking it all in. I think it’s an awesome trade—just don’t tell my dermatologist.

Pity, Party of 1--Your table is ready!

I have been both counting my blessings this weekend and, if I am honest, feeling kind-of sorry for myself. Most of the time, I realize that living with the OC is just a part of this rock star beautiful life I lead. It doesn’t really do any good to play the “what if” game. You know how that game goes: What if I hadn’t gotten cancer? What if I had gone to the doctor three months earlier? What if I had realized I wasn’t feeling well instead of chalking it up to work stress? And on and on and on… I don’t usually let my head go there. As with most things in life, it simply “is what it is”—and most of the time, it’s pretty darn great. But for some reason I have been sad this weekend. My head keeps wanting to pull me into what I have missed while accommodating this disease for the past 7 years (happy cancer anniversary to me this month!). To handle just these kind of days, I made a deal with myself long ago: for every problem you identify, you must sit with yourself until you find a corresponding blessing. The craziest thing about this exercise is, that if I do it in reverse, I can almost never find enough problems to match my blessings. Here’s how it works: Ten Beautiful Things About Living with the OC: 1) When given an opportunity to show great kindness, people almost always rise to the occasion. 2) It is possible to find moments of Joy in almost every situation. 3) Because people listen differently to what you say, your life can be an example of hope to many. 4) You realize that through your weakness, you become powerful. 5) You feel incredibly loved every moment of every day. 6) You have the man upstairs on the bat phone. He always picks it up. 7) Chemo makes you skinny…so you can eat ice cream and queso whenever you want! 8) You have the opportunity to live your life in such a way that you will leave it with no regrets. 9) You learn the value of every single day and you don’t take even one for granted. 10) One day you wake up and realize that no matter what happens, everything will be okay. And now the Ten Difficult Things About Living with the OC: 1) Fear that when the going gets tough, you won’t be tough. 2) Knowing that your struggles cause immense pain to those who love you. 3) Living so in the moment that you haven’t done anything to plan for a future. 4) Life delayed. And delayed. And delayed. 5) Feeling your physical body fail in dozens of tiny ways. 6) Feeling that you have let yourself become “the person with cancer” instead of a person who happens to have cancer. 7) Feeling like your brain doesn’t process like a normal person and that you are just a tad “crazy”. 8) 9) 10) SEE—it happens EVERY SINGLE TIME…I ran out of “gripes” at #7. I’ve got nothing for numbers 8-10. I’m sure I could think of a few more if I really sat here and tried, but it’s SO much more fun to do the blessing list. Whew! I feel better already. But--I am reserving my right to fill in the blanks the next time it feels just a little good to let myself feel just a little bad.

There...I said it.

There… I said it. cancer sucks. Cancer Sucks. CANCER SUCKS. PINCHE CANCER!!!! It’s the strangest thing, but so many people want an expression of anger from me around this disease. I think this is because that is what people who love you feel for you when they learn you have the Big C. They are angry on your behalf and an expression of anger from me means I share their pain at watching me struggle. So, I said it. I’m saying it today in particular because I just found out that yet another friend is facing this battle. I said it even though I don’t 100% mean it. I mean, no sane person would choose it--but at this point, it would be very difficult for me to imagine my life without the blessings that have come along with it. Nothing in life is free, dear friends. This includes the opportunity to have a true appreciation for the value of every single moment of this incredible life. That is what the Big C gives you. 24 hours of every single day of gratitude. SO—Cancer does suck. But it also rocks. Really, really rocks. Like Jon Bon Jovi when he’s singing “She’s a Little Runaway”.

Here We Go Again!

Here we go again! I recently came across my cancer blog which I started writing about three years into what has become a seven year (and counting) journey toward coming to terms with living with cancer. When I first started the blog, I had been diagnosed, had one round of chemo, lost my hair, gone into remission, gotten my hair back, had a recurrence, lost my hair, gone back into remission, and started to get my hair back. Since that time, I have had a stem cell transplant, two more recurrences, two rounds of radiation, more needle sticks, biopsies, tests, and therapies than I can list on one hand—and I have THE MOST AMAZING PONYTAIL you have ever seen. Over all these years and all these treatments, one thing has remained constant: the blessing far outweighs the curse once you learn how to look. For those of you who are following along with me through Andi’s Army, you know that I learned yesterday that my cancer has returned so this seems like a good time to resume writing about my experience as I take the next steps of my journey. My previous entries all ended with something “fun” I said I wished I didn’t know about cancer. Looking back, that seems like such an awful perspective. Reading what I wrote at those early stages shows me how far I have come toward accepting this path that I am on. Moving forward, I would like to share all of the amazing things I have learned about myself through living with the OC. I’ll do my best to update semi-frequently, but those of you who know me, know that it takes a lot of time to live the rock-star fabulous life that I now allow myself to live. I’ll do my best, but there are just going to be times when I am having justice for breakfast, or riding bareback on the best horse in the world, or hanging with the three coolest kids on the Planet. Barring that, I’ll try to give you a candid perspective on what it feels like to live life fully while also realizing that there are no guarantees. And so…to kick of these new entries: Learning how to live on my terms is something FUN I am so glad I have learned through my cancer.

Taking It Off Auto-Pilot

Happy New Year everyone! It’s been quite awhile since my last entry. I think that’s partly because I felt like the entries were such downers when I wasn’t really feeling all that down. I think it’s also because I was blessed with an odd sense of peace in the last half of 2009. It’s also probably because I realize I have been allowing myself to live on auto-pilot for the last 3 years or so and auto-pilot has left me a little under-motivated. It’s really hard to turn that switch off and re-take control. I have spent a lot of time trying to figure out why I somehow just stopped steering my life. That’s so unlike the Andrea that I know. If I am completely honest with myself, it probably started happening before the OC but the problem has become exponentially worse since its arrival. I’ve decided that it’s an ugly side effect of successfully being able to push the fear to the back of my mind. It’s never gone, but it doesn’t make its presence known with the same ferocity that it did for the first couple of years. There are now mornings (maybe even more often than not) when the first thing I think about is not the OC. Sometimes I realize I have had almost a whole day of not thinking about it. Of course, those are the days that I am flipping channels on the tv just in time to hear Dr. Oz say, “Today we are talking about a woman’s most deadly killer…many call it the Silent Killer. Today we are talking about ovarian cancer …the most lethal of all cancers affecting women.” I suppose shows like that are important from a prevention standpoint and if they save even one person, blah, blah blah…but I am here to tell you that is a real buzz kill the day before Christmas.

I think it’s those constant reminders—or (to put a more positive spin on it) those opportunities for “heightened awareness”—that make it hard to keep charging forward with reckless abandon. Here’s the irony of the situation: the more I allow myself to fully live, the more I have to lose if this doesn’t work out the way I hope it will. I know the logic is flawed but it is scary to be happy because if I am truly happy then I will be truly sad if the OC comes back and I have to let it all go. As a result, I think I have directed the majority of my effort at finding peace…but not Joy. I think I had a breakthrough on the peace issue on my ski trip last month. I was in the shower and overwhelmed with a tremendous feeling of peace about dying. The superstitious person in me is scared to write that I am at peace with dying in case even uttering that would somehow hasten the return of the OC—but I had peace in the sense that I think I have finally started to figure out how to fully live in the ways that count. I have cherished the things that really matter in my life on a new level and I hope I am letting go of things that once mattered so much and now matter not at all. Maybe it’s more accurate to say that I think I have finally realized that I could die with no regrets. For the longest time I selfishly thought that it would have been so much better to have just gotten smacked by a bus and have it all end quickly. Really looking at your own mortality can be torturous. I think I am changing my opinion on that. I am thankful for the time I have had to let the people I love know that. I am working hard to make sure that when the time comes there won’t be things left unsaid. Maybe that is the much talked about “cancer blessing.”

So back to the issue of Joy and where I am going with this. I think it is time to step out of my comfort zone and start learning to let Joy back in my life. Don’t get me wrong…there has been lots of Joy. But when Joy starts taking over I always force myself to pull it down a notch. Being too Joyful feels like being out of control of how Sorrowful I am going to be if I have to say goodbye to it all. In 2010 and in honor of the new beginning that the New Year always presents, I am going to stop playing with the safety valve that I have allowed to control my emotions for these many months. This is going to take a lot of work. Specifically, it means taking my life off of auto-pilot and actually starting to live deliberately. I said I was going to do that in 2009 but in many respects I failed. So here it is, in black and white: In 2010, I resolve to live each day deliberately--no excuses, no auto-pilot, no delays, no shortcuts, no fear. Learning how to put my life on auto-pilot and having to write sentences like “I am at peace with dying” are two more “fun” things I wish I didn’t know about Cancer.

Carrying a Big Shtick

What kind of Cancer blog would this be if I didn’t devote at least two posts to my formerly shiny noggin? There are lots of pretty horrific side effects from repeatedly injecting your veins with poison. Many of them are permanent. Why is losing your hair (not permanent) the one that proves so difficult for so many? I don’t pretend to know the answer. It obviously has a lot to do with traditional notions of beauty. But the whole issue of “hair/no hair” goes much deeper than that. I am about to admit something that I have never said out loud. I think it makes me shallow … or crazy … or both. [Sidenote: One of the things about being on a first name basis with the “C” is that you constantly analyze whether you are the most screwed up person on the planet or it’s just the “C” talking.] Those of you who know me know that I have never worn a wig and rarely a hat. I could just never wrap my arms around the idea of walking around with removable hair on my head. But for all of the trauma initially attached to losing my hair, my transition to the new “style” was pretty easy. I was very oddly comfortable being shiny-headed from almost the beginning. I would like to attribute that to my amazing self-confidence. That, of course, is the comfortable answer. It’s more twisted than that. I realized something psychologically screwy going on the first time my hair started growing back. I remember noticing a woman who was obviously going through treatment and almost fondly remembering when I wore that hairdo. I don’t think I was self-aware enough at the time to understand why seeing her in her baseball cap was evoking that emotion in me. I just sort-of filed that scene away. Fast forward to the Recurrence. When I lost my hair the second time, I shed a couple of tears when two years of re-growth was shaved. After that, I do not think I cried over it again. I now realize that is because I use my baldness almost simultaneously as a crutch and a weapon. Let’s be honest. It is the ultimate sympathy-getter. It was my badge of courage. Powerful. Silencing. What kind of person would dare to hold me accountable for anything when I am bearing such a huge and visible burden? But now I am in that “in between” phase. I no longer look like a poor, long-suffering Cancer victim. Now I look like a boy/girl with a VERY bad, way-too-short haircut. Now it is time to start learning to walk through life as me again. No more extra slack. No more sympathy for sympathy’s sake. Just me. Responsible for the impact my actions have on those around me. I have gotten a little used to being the victim everywhere I go. I am going to have to start working on a new shtick.

Trying to get the sympathy vote is another "fun" thing I wish I didn't know about Cancer.

Chia Pet

I am sitting at the kitchen table at my parents’ house. I have been dreading this moment for eight weeks. It is “SHD”—shave head day. My hair is about to fall out. For the past three days, tiny strands multiply in my hair brush. I wash my hair and small clumps stick between my fingers. A brave friend went camping the weekend her hair was to fall out and let nature scatter it to the wind. I am not that strong. Losing my hair makes the fact that I have the “C” so tangible. My secret made so public. PJ has a pair of scissors and an electric razor. My hair is long. And blonde. I think it is my defining characteristic. It is what makes me feel like a girl. I want to donate it to Locks of Love. Carrot bunches it into a dozen pony tails pulled tight at the top. Someone cuts them off at the roots. One by one. We wrap them in paper towels and put them in a Ziploc bag. PJ is running the razor over my head. Clumps of my remaining hair fall to the floor. Incredible sadness. I cannot stop crying. Irreversible, unavoidable step. PJ is being so gentle. I know it is hurting him to hurt me. I regret not thinking to schedule an appointment with a hairdresser to spare him that. I walk to the bathroom and look in the mirror at the new me. I do not look like me to me. I like my eyes.

I have spent approximately 270 days of my adult life bald. This doesn’t include the other 510 days (and counting) that I have walked around looking like a Chia Pet. I have lost my hair twice. The first time was the hardest. Dr. Cold to me: “You have Cancer. We do not know if we can cure it.” Me to Dr. Cold: “Yes, but will the treatment make me lose my hair?” Crazy vanity. Emotion wasted on something so trivial. Tears over nothing … that felt like such a HUGE something. Learning to accept my shiny noggin is another “fun” thing I wish I didn’t know about Cancer.