Thursday, April 25, 2013

When The Universe Has Other Plans...

Fuck. That was the first word to enter my mind when I was told the cancer was back. Fuck. I know what this means. It's aggressive; far more aggressive than we imagined. I'm running out of drugs and out of options. Fuck indeed.

I sobbed yesterday all over Midtown. Big, fat tears fell over anything in my path. Blood red eyes, tear streaked face, runny nose. A mess in every sense of the word. Funny thing is, I don't feel sick. When I was first diagnosed, I knew something was wrong. Now, I feel great and this makes me nervous. Soon, will I not be able to breathe without assistance? I don't want to go down like that. But, do I have a choice? I told Joe yesterday that we need to see our lawyer. I need to set up a living will. By no means do I want to be on a respirator or revived. When it ends, let it end. I'm 37. I don't want to think about these things but I know I have to so no one else is forced to make that decision. 

Sean kept calling yesterday to see how the test went. For the first time ever, I lied to him. I said we hadn't spoken to the doctor yet. I couldn't bear to tell him over the phone. I couldn't bear to tell him at all actually. Jesus fucking Christ he is only 17. Every fiber of my being was aching for him. My baby, my boy. This will stay with him for the rest of his life. Sean. I'm sorry I couldn't make this go away. Please know how hard I tried. 

So now I return to the world of the unknown; except I kind of know. I know this is a battle I may not win but I will give it all I have. Thanks to everyone for their support and their love. It is everything to me. 

Let go of anger. Hold your children tighter. Tell them you love them every day of their lives.  Dance your ass off. Appreciate the beauty of the world around you. Connect. Connect. Connect. 

Tuesday, April 16, 2013

The Weight of Waiting

It's circled in red on my calendar.

Scan day is coming up. Will the time come when I longer dread this day? When it becomes something as innocuous as a dental appointment?

I doubt it. But, I hope so. I really hope so.

My doctor's visit is always scheduled a few days after the scan. This gives my oncologist time to examine the results. For me, though, it is a waiting game. Every time my phones rings, I jump. Is it her office asking me to come in earlier? If I don't hear from her this surely must be a sign that everything is fine. Then why does my entire body shake while I wait for her to walk into her office? 

Every three months. 

The fear of reccurence intensifies the closer I get to scan day. Will my body betray me again? Will I have to endure the pain and anguish again? I erase these thoughts from my mind and remember what my doctor told me. "Focus on what you know to be true." What I know to be true at this moment is that I feel great; I feel healthy. If my scan tells me otherwise, I will deal with it. I don't have a choice over the results; only my response to them. I pray they still show no evidence of disease. I've already started to get the neck spasm that occurs when my body is tense for too long. I need to meditate. I need to practice my yoga. I need for it to be next week already. I need this weight to be lifted.

Whatever I am told, I will continue to live a life of profound gratitude for all I have learned in the last year and a half. How many people get the chance to truly live? To wake up everyday with a sure sense of their place in the world? How lucky am I?

 I am here. I am living. I AM ALIVE.


Dressing For Chemo

I recently drove to Vermont with my friend, Chris, for a weekend visit to see my older sister, Trish. As soon as I saw Chris walking toward my car I burst out laughing. She had with her a simple knapsack which held a pair of jeans, a sweatshirt and a few other necessities. She asked me why I was laughing. I got out to show her my huge suitcase which took up the entire trunk of my car. She laughed and said, "Typical!" Chris says I'm high maintenance on the outside, simple on the inside. I can live with that.

When she asked me what my sister was like the best response I could come up with was, "Well, she is the total opposite of me."  Trish is jeans and t shirts, Burt's Bees lip balm and wash and go hair. She can pull it off because she is just one of those naturally pretty women. If she wasn't so nice I would hate her! With three young girls to chase after and a hotel to run, she doesn't have time for anything frivolous. I, on the other hand, must have at least 3 full outfit options on any given day, will wear exquisitely painful shoes if they are cute and can rock enough diamonds to rival a mid level rapper. Her daughter, Emily, is just like me; she loves anything that sparkles. When Emily was 5 she walked into my closet and asked if she could have my shoes. "No way", I said. "I wear them, plus they're too big for you!" "Well, can I have them when you die?", she asked. Laughing, I said "Of course you can!" Considering I have about 200 pairs of shoes, this is quite an inheritance. I did tell her, though, that she couldn't have my black patent leather Christian Louboutin heels; they're my favorite and I'm taking them with me! For the past 4 years Emily has reminded me of that conversation and we would laugh. Except for this last visit. It didn't seem funny anymore once I truly faced my own mortality.

When, in 2011, I was diagnosed with Stage IV colon cancer I would post updates on Facebook about my treatments, the side effects, etc. My sister's question before every treatment was, "So what are you wearing?" She knew I would spend hours going through my closets to pick the perfect outfit for that day and wanted to see the fruits of my labor. I began taking pictures of the fully assembled outfits. I labeled the photo album Chemo Fabulous! Soon enough all of my Facebook friends would look for the new photos and comment on them. Posting those pics took the angst out of the day, calmed my nerves and gave me something to look forward to on a day I grew to dread. I needed to feel as normal as possible and losing myself in racks of clothing served as the ideal distraction from what was going on. 

My routine is this; the night before treatment I tear through my closets. I have three closets upstairs and one downstairs and they are all filled to capacity. My bed is then covered in options; pants are paired with a few different tops, dresses may have a scarf or sweater added. Once the basics are nailed down, then I go for the shoes. Oh how I love shoes!!! They bring me an obscene amount of joy. I have a walk in shoe closet that makes me smile each time I open the doors. Ok, shoes...done! Now on to the accessories; necklace, rings, bag. Is it a lot of work? Maybe. But it's a labor of love. I take my clothes seriously and myself less so. As soon as I pull it all together the next test is, do I hear The Commodores song 'Brick House' when I look in the mirror.  If the answer is no, then it's back to step 1. If I do, then I sashay my way out the door and head to treatment. Isn't this how everyone gets ready in the morning?

But all of my hard work pays off as soon as I walk into Sloan and see my nurses. I love how they make a fuss over me; commenting on my shoes, my accessories or my newly grown hair. I know some people may think it's silly or superficial and maybe they're right. Often I have looked around the waiting area and have seen people not only in sweat pants and t shirts but also in wheelchairs and oxygen masks. I'm sure fashion is the last thing on their mind. Sometimes they will look at me and smile. Once a woman in a wheelchair asked me who I was with. When I told her I was the patient, she held my hand and told me that gave her hope. She didn't need to explain any further for I understood completely. She was thin and frail looking; cancer had robbed her of her strength. Maybe she, too, was once a fierce dresser. I haven't seen her in a while but think of her often when I get ready for treatment. 

My husband is baffled by my clothing obsession. I happened to marry someone who couldn't care less about clothing or shoes or anything with the slightest air of superficiality. Our son, Sean, is just like him. At 17, he is well past the age of being able to dress him. He wears jeans with ratty old t shirts and beat up Converse sneakers. When it gets cold, he puts on his favorite bleached stained sweatshirt. He is truly indifferent to trends of any kind. If ever he is in the room when I'm getting ready for my day, I feel like I'm the subject of an anthropology thesis. "Why do you wear makeup?", he'll inquire. "If the shoes hurt why do you wear them?", asks the silly boy. If he didn't look just like me, I would swear he wasn't mine. I blame his father.

Today Sean said, "Mom, I don't know any other woman who would get so dressed up for chemo. Why do you do it?" I told him that if I didn't then cancer won. See, I'm not a sweatpants and sneakers kind of girl; never have been and I'm not going to start now. Cancer took parts of my body but it will never take the essence of who I am. I believe in the power of red lipstick and manicures and a great shoe. Getting dressed up may not heal my body, but it heals my soul. One day soon I'm going to step off of the Sloan-Kettering runway but I won't stop being fabulous. I just won't be chemo fabulous anymore...and that's ok with me.