Pieces of You

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I am realizing it’s been a long time since I’ve posted anything, which is ironic because I’ve had plenty of time on my hands for the last month. I’ve thought about sitting down here at my desk and writing about a bunch of different things but I never did. It’s a lot easier to get wrapped up in meaningless distractions than it is to sit down and express your loaded feelings.

A lot has gone on since the end of last year. For one, I finished my chemo treatments in mid December. The nurses removed my P.I.C.C. line two days before new years eve. I can’t tell you how great it is to be able to take a shower without Saran cling wrap, garbage bags, bandages and waterproof tape. To be able to just get under the water without being encumbered or worrying that water will seep into my seemingly impenetrable plastic is seriously amazing. There are so many mundane things in life that we take for granted, showering is definitely one of them. The ability to wear long-sleeved clothing fits into that category as well. Another thing I’m glad to be able to do once again.

My doctors were worried about the fact that after each chemo treatment, my white blood cell count took a long time to recover. I remember when I was undergoing chemo the first time that they were able to give me something every week or at the most, every other week. It was now coming to the point where the count would still be dangerously low after three weeks. So, they thought it best to stop chemo and expedite my surgery as they didn’t want this thing to sit around in my body any longer than it needed to. The plan was to remove the affected part of my pelvic bone and replace the deficit with a plastic mesh. Flash forward to this month and the surgery has been cancelled and rescheduled 4 times. It was originally planned for January 13, but after careful consideration, my surgeon informed me that if he removed the amount of bone necessary to get rid of the tumor, I would be facing a major bone deficit. More than he had originally anticipated. So, he and the plastic surgeon thought it best to use another bone from my body and to graft it into the pelvis with metal plates and screws in order to securely fuse my pelvis to the spine. They then needed another cat scan to get 3-D imaging of my good leg as they plan to remove 4 inches of my fibula to use in the grafting. So, the surgery was cancelled and rescheduled for the following Tuesday, January 20th. When the time was drawing nearer, they said that the model would not be completed in time for the operation and that the plastic surgeon was going on vacation (again), and that they needed to reschedule it for this past Tuesday January 27. On Monday I was informed that due to the impending “Blizzard” all surgeries at the hospital had been cancelled. It’s now going to be this Monday, February 2.

I can’t begin to tell you what it feels like to be sitting on pins and needles for 3 weeks waiting to see if today is really the day that you are going to be cut into pieces. The nightmares alone have been enough to drive me to drink. I feel like I have been on a roller coaster of fear, panic, anger and anxiety. But then again, I’ve been on this ride since last June. All I want to do is get off in one piece, but I know that’s not really possible. I’m already missing little bits here and there. Cancer doesn’t just eat away pieces of your physical body, it also chips away little chunks of your soul. I have no idea how I managed to live through all of this once, it’s hard to imagine doing it again. Somehow I’ve managed to get through chemo to this halfway point but I’m terrified of what is standing between me and a real life again. I’ve blocked out a lot of what I went through after my first two surgeries. It was really bad. Recovering from the 3rd one was no picnic either, even though they didn’t cut bone that time. I still had to learn to walk again through months of PT. I can’t remember the last time I really felt like myself. I’m not sure that I’m ever going to feel like that person I was again. Like my surgeon said after he operated on my leg, it will be relatively functional, but it will never feel the same.  

Today the office called to confirm that we’re a go for Monday and I’m a wreck. I feel like I’m on the verge of a full-blown panic attack or bursting into tears at any minute. I’m trying hard to keep it together. Everyone always tells me that I’m so strong and brave but I’m really not. I’m fucking scared all the time. I just don’t have a choice. There is no choice when it comes to cancer. No choice and no control. And being out of control terrifies me. Whenever a doctor tells me something I can’t say no, it’s a do this or die situation. And I don’t want to die. Not now. I want to feel the sun on my face. I want to have a reason to get out of bed in the morning that doesn’t involve a medical consult/treatment. I want to have a rewarding and satisfying career. I want to have a nice boyfriend who loves me for who I am and doesn’t care about all the scars on my body. I want us to eventually get married and start a life together. Possibly a family. I want to travel to beautiful places and eat delicious food. I want to be free and leave all of this shit behind me. I don’t want to be worried about recurrence or what’s going to happen to me. I need this to truly be over in every sense of the word. I need some semblance of peace. I just want to be happy… 

Beth

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My heart is so heavy right now I feel as if I can’t breathe. My dear friend Beth lost her battle with sarcoma tonight after fighting for three long years. She was the only person in my life who understood exactly what I was feeling and could truly identify with what I was going through. I met her at the cancer hospital just after starting treatments last year. She came into my room like a ray of sunshine. She was so open with me about her personal struggle and so reassuring that I would be fine. She was always trying to help me with her wisdom and always thought of my well-being, even when she was in pain or suffering. I remember one of the first pieces of advice she gave me was that I should wrap a towel around my crutch to make it more comfortable to use. Whenever she was at the hospital, she and her wonderful husband would come visit with me. Everyone at the center knew her and loved her. She was like the most popular girl at school and she took me under her wing and made me feel at home in a place rife with fear and uncertainty.

After I was done with treatment last year we stayed in touch. Even though she was so sick, she was always so positive. Her strength was truly something to be marveled at. Her words of encouragement kept me going and they touched me in ways no one else could. Because she understood. She just knew.

When I found out she may be dying, I was devastated. I didn’t want to believe that it was true. It made me want to set fire to the world. Of all people, why her? She was such a selfless, caring woman with a good heart. Surely she didn’t deserve to go out like this. It makes me so mad I want to put my fist through a wall. It just doesn’t make any sense. It simply isn’t fair. 

She was such a beautiful soul and I’m certain that she touched the hearts and lives of many, not just my own. I hope she knew how much her friendship meant to me and how much I loved her and valued her guidance. From this day forward, my fight is her fight. Everything I do to beat this thing will be with Beth in my heart and on my mind. I pray that my victory can be hers. May she finally rest in peace.  

Sweet Dreams

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It’s been a long time since I’ve posted. For whatever reason I haven’t been able to just sit and let the contents of my mind flow outward. I’ve been trying to keep it all in. Sometimes I’m afraid that if I really get in touch with what it is I’m feeling/thinking, I will completely lose it. Like I will start crying and just never stop. I have to say, holding things in hasn’t helped me any. It’s only wound me up that much tighter. 

I’m utterly exhausted. I am now an insomniac. I can’t think of the last time I really slept soundly. My personal best is 4 hours straight without waking up, but most nights I awaken every 2 hours. On particularly troublesome nights, I am up every 45 minutes to an hour. There’s always a time before dawn where I am just wide awake, changing positions restlessly for at least an hour, sometimes 3, trying desperately to fall back asleep. I do somehow manage to have dreams while I’m in these brief slumbers and they run the gamut from fairly happy to dark and disturbing. I don’t think I’ve had a full, undisturbed 8 hours of rest since 2012.  Although when I was on Gemzar, I was so tired I felt like I couldn’t keep my eyes open for more than ten minutes. I felt complete exhaustion from the moment I woke up in the morning, like I hadn’t slept for days. 

What I wouldn’t give to sleep through the night. At this point, I’m used to looking in the mirror and seeing dark half-moon circles under my eyes and fine lines that never used to be there before. Even when I take an Ativan, I still awaken 2 hours after I close my eyes. I used to be a champion sleeper. I could go 12 hours straight if I wanted to. Sleep has always been an escape for me. When I didn’t feel like facing the world, I could just lay down and be someplace else in my mind.  A couple of weeks back, I had a dream that my friend and I were walking in the woods up a very steep grassy hill. We were going towards a light, a sunset so bright and colorful, it could take your breath away. Pinks, oranges, purples and golds all swirled together into this almost blinding light. When we finally reached the top of the hill, we discovered that it was a cliff. At the bottom of this cliff about a mile down, there was an ocean and a road. I tested the ground before us with a stick and it went straight through the earth. She told me she was scared and we held hands. I said to her that I wasn’t ready yet and we slowly walked backwards away from the edge. Then I woke up. 

I’m not ready yet…

Settle Down/The Sun Also Rises

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Cancer can make you do some stupid things. It can completely cloud your judgement. It can lead you back to people and situations that are just as toxic now as they were once upon a time. But you think, “Fuck it,  I have cancer. What do I have to lose?” While that initial bout of fearlessness is quite liberating, in the end it will only break your heart. Some things never change, even though you have. You think things will be different now, but they won’t. Everything seems to be just as you left it. Why do we suddenly cling to things we know aren’t good for us when shit hits the fan? Why in moments of intense vulnerability and weakness do we find ourselves complacent to grasp at straws and consume the paltry crumbs carelessly left behind with such fervor? They will never truly satiate us or satisfy even our most basic desires. Why when faced with the prospect of our own mortality are we willing to settle? 

This post is for everyone else out there who is currently suffering and staring down the barrel of a gun. Don’t you dare for one minute settle for less than you deserve. Not for anything or anyone. If this is indeed our last hurrah, do we want to go down knowing that we compromised ourselves?  That we let our pride and dignity fall by the wayside for a moments pleasure? Or some pathetic attempt at seeking comfort?

My grandmother always used to say it’s better to be alone than in bad company. Remember that there were valid reasons why these people and places disappeared from your lives and being sick doesn’t change any of that, much as we wish it would. Now is not the time to settle, now is the time to revel in the pure and genuine aspects of life. To lean that much harder on those things you know to be true. The things that don’t bend in the breeze. The people who deserve to be in your heart because they’ve earned it. Those who know your worth and never let you forget it for a second. Don’t waste another minute of your time dwelling on things that ultimately aren’t worth a damn. Don’t lose anymore sleep over people who rest comfortably in their beds at night without a thought of you. Trust that there is better, trust that there will be more days in the sun. 

Heart Ache

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I had to pay another visit to the cardiologist this week. My oncologist is looking for someone to tell him exactly how strong of a drug he can use on me without giving me a heart attack (always a good thing to know), so I had a pow wow with a specialist. Prolonged QT syndrome isn’t just some bullshit inconvenience that prevents me from ingesting certain medications, turns out it can occur anytime and it can be fatal. In fact, the cardiologist was so concerned about tracking the rhythms of my heart during my recovery that he decided I needed to be fitted with a recording device. This pen cap sized piece of modern technology knows when my heart is too slow or fast, is experiencing arrhythmia or any other maladies. Yesterday morning they implanted a loop recorder into my chest just under the skin and I was told I would likely need to take beta blockers for the rest of my life. It seems I officially have a heart problem. How, after being perfectly healthy for almost 31 years on this planet with a fully functional heart, did I suddenly end up here?  I wonder if this thing can detect heartbreak?

I’m Not Cut Out For Cancer…

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If cancer was a job, I would have given my two weeks notice after my first day. Not that it’s a position anyone in their right mind is vying for, but I am just not cut out for cancer.

I am somehow allergic to every single anti-nausea drug on the market. I am allergic to just about every medication you can think of, (including fucking Benadryl!!), thus landing myself in the E.R. more times than I’d care to remember. It’s like anything that can possibly make chemotherapy the slightest bit easier does not sit well with me. And then there’s the damn chemo itself, which seems to affect me 10 times harder than it would an average person. We’re at the point where it’s unclear what is the best course of treatment for me because I’m “so sensitive.” Jesus.

I’ve been told that I’m “sensitive” my whole life, but usually it’s referring to my personality. Maybe it’s because I become emotionally invested or that I care very deeply about things. Maybe it’s because I’m a worrier and I over analyze everything. Maybe it’s because I cry easily and fall in love hard. Maybe it’s because I’m too nice and trusting. Whatever. I never saw being sensitive as a bad thing, but in this case…being sensitive sincerely sucks! 

It’d be nice for once not to have a fucking complication or an unexpected side effect while I’m trying to get through this. It’s bad enough I have to suffer through all of this shit again for a second time for whatever reason, but can’t it be somewhat bearable?!  It’s times like this I wish I was anything but sensitive. That I could be a stone cold bitch who feels nothing. But alas, I’m just the same old “sensitive” gal I’ve always been and it ain’t doing me any favors right now. 

People & The Power of Prayer

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Some people say blood is thicker than water, others will tout that family is not about blood but those who are willing to hold your hand when you need it the most. I’m finding that I’m blessed to have both an amazing family who will always be there for me and a small group of people who are willing to stand by me no matter what. Unwavering  support is a beautiful thing. Sometimes people really surprise you. Sometimes people you thought would always be there for you aren’t and people you never thought in a million years would be by your side step up. The outpouring of support I have received after my diagnosis has been truly staggering. It’s nice to feel so much positivity and prayers floating your way, particularly on those days when you can muster neither. People say that there is power in prayer. Perhaps. Though I have to say it feels pretty good to know that family, friends and complete strangers are thinking of you when they are communicating with their respective G-ds all around the country and the world. I don’t know if it’s helping, but  it certainly can’t hurt.