“In my everyday life, I am often consumed by my effort to stay alive.”
Today I’m sitting in my Grandmother’s cottage on the Ocean City, NJ beach. It is cloudy and there was rain last night. A perfect morning to wake up, write and have some coffee. This will be my last time here at my Grandmother’s house, a place that some people chuckle about when they hear ‘the jersey shore’. This is a entirely different area of Jersey than the infamous ‘Jersey Shore’. This place was an incredibly important piece of my youth, this house, this beach. I grew up on this beach, in these waves, on that boardwalk. I’m recovering from more brain radiation that I had earlier this week and I can’t think of a better place to try and bounce back.
I’m reminded as I sit here having a coffee that my life is very different from others. Somedays it’s easy to feel like another normalish human on this earth and then there are the days that I feel like I have a sticker on my forehead that says, “Got Cancer.” The man who checks me through security yesterday, checking my documents etc, looked at my ID and remarks on how different I look than the photo. This actually happens more than I’d like it to. Maybe I should get a new photo ID. Sometimes when I’m questioned about my appearance I just play it off, like it’s not a big deal, but when airport security is giving me the questionable eye I say, “Well cancer will do that to you”. He says I look wonderful and that he’s sorry to hear this, to stay positive and to keep fighting. He was genuine and for once this statement about my appearance didn’t make me want to punch this person in the face…oh the daily struggles of living a cancerful life.
Getting to the meaning of the title of this blog. Upon my return from Europe in July, I had a brain MRI that showed a new tumor. I have not given it a true name this time. I refer to it as ‘Clarice’s baby’. I was diagnosed with brain metastases from my breast cancer in February this year. I had a scan in May and it was clear after the craniotomy and 10 treatments of radiation. This tumor is/was a very small baby tumor hiding in the back of my brain. A baby tumor so small that they actually missed it on my scan in May. Thankfully Baby Clarice has grown very slow and the required treatment this time was more radiation but a different kind, a much stronger radiation than last time. This one radiation treatment had more radiation than my last 10 treatments combined, by a lot. So much radiation in fact, that they had to partially sedate me for 3 days after because of the high risk of seizures. This treatment is referred to as cyber knife or gamma knife. The champagne is just because I’ve been drinking a lot of it recently!
Can you see it??
Recently I’ve realized how scared I actually am. The doctors say all these feelings are completely normal “given the circumstances.” Before my radiation treatment I had to have a mouthpiece custom made that would secure my head in place. I thought the mask last time was bad, this was way worse. God forbid, they radiate the wrong part of my brain. I had to go to a different area of the hospital than I normally do. It was in other words in the basement. The elevator opens and the first thing I see is a cancerful child, several of them, coloring at a table, playing with toys. It took my breath away. In the 3 years I’ve had cancer and cancer treatments I’ve never seen a child. I welled up with tears immediately and stood there for a second dazed. They had beautiful bald heads and skin just like i remember. It hurt my heart. Normally I’m the youngest one in the waiting rooms.
My mom says one day recently through her tears, that the treatments are becoming more and more barbaric and that it’s just not fair. Well, unfortunately or fortunately this is how we now have to manage my terminal disease. This is the cost. This is the only way at this point. The doctors refer to it as a kind of cancer maintenance. I get the idea but at the same time I want to say, ‘can you not refer to me like I’m a vehicle?’ So we are ‘maintaining’ my disease until it becomes unmaintainable. Dr. O says it wouldn’t be unlikely for there to be several new brain tumors that show up in the upcoming year.
I thought I had a clear scan two months ago but when the doctors looked back, this new tumor was actually there. They just didn’t see it. The last two months and during my trip to Europe I’ve been on this no new tumor high and I have felt great emotionally and physically. With this new tumor and learning that it was always there I feel like I’ve been knocked down by Mike Tyson or whoever punches really hard. Less than a month after my surgery it grew. I think about what my oncologists have told me since the beginning, that the first 3 MRI’s are the most important and the most indicative of how the next 12 months of my disease will progress. It’s reoccurring quickly but slowly. So it’s good and bad. It’s ‘maintainable’ right now. I am devastated to be completely honest. I have been saying the whole time if I could just get like 6-12 months of clean scans I’d be really happy, just a little more time. I am reminded that this may not be my reality but I will still hope for it.
I feel like I’ve been living the last two months on a magic cancer carpet of no new tumors. Now my magical cancer carpet is coming down and I’m suddenly living in the Fault of Our Stars instead of Aladdin. I think morbid thoughts at times, like, how fast is this going to go, how much time will I have, will I get to Bali or Morocco? I think about how my life has changed since my diagnosis and the changes I’ve made to be a healthier me. I became a vegetarian (except i didn’t give up cheese. What do you think I am, crazy?) I burned sage and whatever else people told me to burn. I meditated and practiced hot yoga consistently, I limited myself to only 2 glasses of champagne a day 😉 I’ve been taking alllll my pills and complying medically with everything they tell me to do now versus a year ago when I just said F off. I swallow a handful of 16 brightly colored pills at night, supplements, hormone blockers, chemo, sleep meds, anti depressants, anti anxiety meds for ptsd, supplements that are supposed to help me be strong and give me energy and probiotics.
What a difference 12 months make. Now, my first question for my doctors is “What’s the most aggressive form of treatment I can do?” What has shifted in me to make me want to keep going with all this ‘crap’? Why am i suddenly ok with all of this treatment? I feel like a hypocrite sometimes but at the same time it’s my life and my decision and we all know that things change and sometimes it takes someone else to show you the path, the way, even if it’s a way that last year you would’ve given the middle finger to. I want to keep going. I want to keep doing what I need to for me, my mom, my family and friends.
I’ve always said to my therapist and to my mom, that I knew my cancer was going to come back. I just didn’t know when. I knew the biggest risk of recurrence was the first few years. I guess I’m right on the cancer schedule. There was actually a tiny bit of relief when it did come back. But now, there’s still an element of waiting, waiting for it to come back again, waiting for it to take over my brain, waiting for it to truly affect my ability to live freely. Sometimes in my head I think F it. This effing sucks. Cancer effing sucks and I don’t want it anymore. I don’t have that option so educating myself about my disease and hearing other’s experiences and traveling and smiling reminds me that I am still alive. I can do this. I can feel however I want to feel, good or bad. “Give yourself a break” is a sentence I hear a lot from people closest to me and from my own heart. I need to give myself permission to feel all of it or sooner or later it will all catch up to me anyway.
I’m sure I’ll adjust. It’s inevitable. I always typically do. I had just finished readjusting to one kind of new normal life, now it’s another. Somedays are harder than others to focus on the future or daydream in the same manner I used to. There are some days when I still believe the idea of running away to an island will cure me. That, that’s all it would take to find the peace in my life I’ve been looking for all these years. I know different now. It doesn’t matter how far I run it’s all still there/here. By ‘it’ I guess I mean the heaviness, the weight and sadness of my life at times, the panic that follows me around on some days. At 37 you’d think I’d learned my lesson about running. I ran to Oregon, Australia and back again. I’ve traveled pretty close to as far as I can go. I’ve seen the world by car, boat, bus, bike, plane, train and my own eyes. I wouldn’t give that back.
My new oncologists told me recently that they were aware of my hesitance towards more treatment based on what they read from my medical history. I thought I was on everything I was supposed to be on chemo wise but I’m not. They’re sneaky and clearly very smart 😉 Dr. C and Dr. T said that they didn’t want to ‘throw the kitchen sink’ at me. I understand that their motive was to ease me in gently to this new stage of my disease, to start off easy with the daily chemo again and see if I tolerate it better than last year. In actuality there are several more things I need to be doing but they’d prefer it if I took this in baby steps so I don’t just quit like last time. So in September along with my daily low dose chemo and everything else, I will start a monthly injection that will shut down my ovaries completely and put me into menopause. I will also have a 17th pill to take. 6 months after I begin this regimen we will make a decision about removing my ovaries and/or doing a hysterectomy. After that I would need more long term medications to help combat bone loss at an early age and another scan would be added to the list twice a year to monitor bone loss.
I’ve passed every neuro exam I’ve had. I know them all by heart now. I can play patty cake with my oncologists. I can follow their fingers with my own. I can squeeze their fingers using my hands. I can resist force on my legs and I can put one foot in front of the other. The effects of brain cancer and the surgery and radiation for me is memory loss, tremors, fatigue, headaches, dizziness upon standing or bending over. Most days I keep moving forward. Somedays I lay on the couch or in bed and don’t get up. I can’t work so filling my days has been a struggle. I try and read a bit everyday, write a bit everyday, re arrange my closets and my mom’s kitchen cabinets. I think I’ve finally gotten the cabinets perfect, even though a month later I’m still opening the wrong cabinets for my cereal bowls and coffee cups. I just started painting and that helps, even though I am a terrible painter.
Now that I can’t work I have a new struggle to work through. We attach so much importance and worth to careers and money that when that doesn’t exist anymore how do we still feel worthy? Even on the days that I can’t get out of bed I at least try to do an errand or cook a meal. It’s incredible how just doing an errand makes me feel better. Maybe it’s a bit of just being outdoors and feeling the fresh air across my skin or maybe it’s the relentless reminder of a deep need to do something, anything. That desire and need to feel useful and worthy and productive doesn’t just go away.
While upset at my recent ‘setback’ I think about how in less than one short year I was able to experience an insane amount of cool stuff and see more beautiful places than I ever imagined. I also think about how 8 weeks after brain surgery I was walking around Iceland with my mom and having mimosas on the beach with my friend in Mexico or biking around Amsterdam or sitting on the beach in Spain. I think about the trips I have coming up this year and try not to think about the potential that I won’t be able to go. Maybe I won’t get to Asia or Tahiti this year like I had hoped but the travel list for 2016 is still pretty impressive and it’s not over yet. I still have Hawaii and Panama to come!
I have several really important scans coming up next month and I’m not going to lie and say I’m not worried. I have a bone scan, CT of my chest, abdomen and pelvis in August. Dr. C’s statement from several months ago is ringing in my ears when I think of these tests. “We are concerned that because of the rarity of breast cancer spreading to the brain as a first stop that it’s somewhere in your abdomen/chest but we can’t see it yet.” What if next month they find something and that nothing that I’m doing will help. I can’t imagine having the time left that the stats show. A year? It has already been 6 months. I cant even begin to process that potential reality, so I won’t right now. Right this second that is not my reality so I just remind myself to stop it. Right now I’m sitting in my Grandmother’s beach cottage and enjoying every moment and remembering her and what I had the opportunity to share with her before she passed. Right now I feel OK. Right now I am doing something productive and worthy. Right now I am happy. Right now I am still moving forward. I won’t let myself go backwards.
“She was beautiful, but not like those girls in the magazines. She was beautiful, for the way she thought. She was beautiful for that sparkle in her eyes when she talked about something she loved. She was beautiful, for her ability to make other people smile even if she was sad. She wasn’t beautiful for something as temporary as her looks. She was beautiful, deep down to her soul.”