Forgiveness

I’ve been thinking a lot lately about forgiveness. It’s definitely something I’ve struggled with in the past and something I continue to grapple with today. I’ve had my fair share of being wronged in my life but if a person legitimately apologizes or reaches out to make amends, I’m generally amenable to a fault. I find the person I have the most trouble truly forgiving is myself…and that’s the person you really need to forgive at the end of the day. As much as you may hate yourself sometimes, you’re all you’ve got. We come into this world alone and we leave it alone. If you can’t even forgive yourself then how can you ever expect to forgive someone else? Sometimes you love the wrong people. Sometimes you make the wrong decision. Sometimes you trust someone you shouldn’t. Sometimes the people you think will be in your life forever disappear without a trace. Sometimes we fall and we stay down longer than we intend to.  Sometimes you mistake evil for good. Sometimes you wish you’d done something differently. Sometimes we just plain fuck up. But we have to just keep on truckin’. I know that I am always striving for perfection and that I often hold myself up to impossibly high standards. I also know that these are both recipes for disappointment. No one is harder on me than I am on myself. I have compassion and love for all of the people in my life, even strangers garner more empathy from me than I can muster for myself. It can be really hard to start the process of true forgiveness, but it’s ultimately a road worth taking. If we can treat ourselves the way we would treat a beloved relative or a treasured friend we would all be much better off in our own minds and spirits. We tend to forget that we are fallible, erroneous and fragile. We don’t know everything and we don’t always make the best choices. We can let it weigh heavy on our hearts and minds or we can simply forgive ourselves, learn from our mistakes and try again. Bad things happen in life, it’s just inevitable. Be it because we are being punished by some higher power or because life is just a random series of occurrences and some of them are bound to be shitty. I honestly don’t know where I stand as far as the why, but I trust that forgiveness is a factor in the healing of our self-inflicted wounds.

Normal

I had an anxiety dream last night about having had my purse stolen and then trying to get home on a city bus. I realized I didn’t have a metrocard or any cash to pay the fare but what was worse was that when I got onto the bus, there was a giant step that came up to my chin that I was expected to climb up in order to get on board. There was a large line of impatient people behind me and I was trying to tell the driver that I needed the lift because I can’t climb stairs and he ignored me, looking straight ahead through the windshield. I felt so frustrated, helpless and alone but most of all, I felt different.

Funny, I’ve always felt different my entire life. I never seemed to fit into a group or a category, I just marched to the beat of my own drummer, as my mother would say. I always felt out of place or like I didn’t belong. It’s difficult to feel that way as a child and it’s surprisingly not much easier to feel that way as an adult. I used to long to belong, to feel “normal”…whatever the hell that really is. 

Cancer has its own unique way of making you feel different. For the most part, no one else can really see it. Yes, people can see that I’m crutches and if I’m feeling confident enough that day to wear something that isn’t ankle length, they can also see my scars, but that doesn’t necessarily make people think cancer. And yet you feel vulnerable, exposed, raw, insecure and fearful, because you feel like you aren’t normal.  Because your body parts no longer resemble that of a typical person. Because the things that you’ve felt and experienced are not normal. It’s not normal for a 31-year-old woman to have a fake knee and have a prosthesis, to be missing pieces of her bones, muscle and skin. To not be able to climb stairs to get onto a public bus.

Maybe you start to long again to be normal, to be who you were before any of this stuff ever happened. But you’ll never be the same person again, and that’s not necessarily a bad thing. Just as it’s not necessarily a bad thing to be different. When I was younger I was painfully shy, I was that way up until high school. I got made fun of a lot and I got tired of it. So one day, I just started to make fun of myself before anyone else had a chance to and people thought I was funny. I’ve carried that self-deprecating humor throughout my life as a defense mechanism. Because being different wasn’t a positive attribute in my eyes nor the eyes of my peers or society at large. It’s no wonder people spend so much time obsessing about their appearance after a surgery. They know that even the slightest physical abnormality will garner a fair share of looks and questioning so long as it’s visible. 

In truth, there’s no such thing as normal. Sure, there are tons of people who easily fit into check boxes but are they any happier than I am? Normal is a relative term and really, it’s quite boring. Being a black sheep has it’s merits. Feeling different can be empowering if you allow it to and stop getting hung up on societal/religious/social expectations and constructs. Being different should be embraced and celebrated but it’s often criticized, ostracized and feared and that’s a shame. Coming to terms with differences in one’s physicality is not an easy feat by any means, but it’s one I’m actively working on coming to terms with. One day I will be able to take the stairs again and walk without crutches and one day I will forget about my scars and not think twice about showing my legs in public because they are a part of me. A part of me that I shouldn’t be ashamed of. 

Progress

So here we are, nearly 13 weeks after the surgery. It’s crazy how fast time has been flying on the one hand, but on the other, things seem to be moving at a crawl. I’ve been on what I’ve aptly dubbed as “house arrest” for what is beginning to feel like a small eternity. It’s just me, my cats, my unyielding thoughts and my crutches day after day in a sea of books, television, my loyal peeps/family and the occasional jaunt to a medical facility. Sometimes I feel like I’m looking at life through a pinhole, craving the freedom and independence of escape but also feeling the fear of what lies in wait. I’ve been cooped up for so long I’ve become like a caged animal, afraid to leave captivity but feeling my base instinct telling me I am meant to roam free. There are days like today where I just feel full on anxiety wrapping it’s evil clutches around my guts, unsure of how I can truly relax. I have to remind myself that while this feels somewhat like purgatory, hell is miles behind me. That there has been a marked progression in my circumstance from where I was all those weeks ago. I can now crutch short distances without a wheelchair. I can cook myself meals, albeit with an annoying level of difficulty. I no longer need help bathing. I don’t need the support bars over my toilet to use the bathroom. I can sleep in my bed alone without being deathly afraid. I can sit here and type this post without crying out in agony from sitting. They are small victories but they are victories none the less.  

People are always talking about taking things one day at a time and saying that one should always live their life in the present moment. I’ve always had extreme difficulty doing this and have definitely struggled with the concept of both throughout my tumultuous journey. The only thing I know is that the past is too painful and the future is too frighteningly uncertain. So I will do my best to just rest here in the present. As Emily Dickinson so poignantly wrote over 60 years ago; Forever is composed of nows. 

One is the Loneliest Number

It’s been a very long time since I’ve been in an actual, legitimate relationship. Unfortunately, I’ve had more hurt and disappointment than love and happiness over the last three years. Many a night have I cried myself to sleep, hoping that circumstances could be different. That my prince was just waiting for his perfect moment to ride gallantly into my life and save me from the evil that has plagued me. To wake me from this seemingly endless nightmare and bring me back to life.  At this point, after everything I’ve been through, I feel like I need love now more than I ever have. Some days I can literally feel the open space deep within my chest, empty and hollow. Other days it’s a constant gnawing, an unsatiated hunger that leaves me cold. I have a desperate longing for the touch of a man, to feel his love wash over me and take away this melancholy that haunts me so. To feel the warmth and safety of strong arms wrapped around me, fingers intertwined. To lay my head on his chest and breathe in the scent of his skin while he runs his hands through my hair. To be truly loved, desired, needed, wanted, all of it. To belong to them. To finally be something to someone. To be beautiful to them. To have my heart truly be received by a kind soul. To feel the pain of what I’ve been through slip away with each gentle kiss, with every lasting embrace. To look into someones eyes and see their passion reflected back into mine. To simply exist with each other, healing together in love. To feel that hopeful spark of happily ever after. It’s a stupid dream, really. It seems to be the dream of a naive child and not that of an educated woman, but at the end of the day it’s the dream I wish and hope with all of my heart will come true. 

Cancer-Free

It’s occurred to me that I haven’t mentioned a very important detail that was made known to me over a month ago. At my first post-surgical appointment, my surgeon and my oncologist informed me that I am now officially cancer-free. I was handed a 4-page pathology report that was made after analyzing the tumor, bone, muscle and other bits that were removed from me during the operation. It was mostly scientific mumbo-jumbo that a non-medical professional such as myself could not decipher, but the third paragraph told me everything I have been wanting desperately to hear; No tumor seen. 

Everyone was very excited by this news; my family, my friends, my doctors, they all had one thing in common in their reaction to the diagnosis; They seemed to feel a genuine sense of relief. I was definitely pleased to hear that the cancer was gone but it wasn’t like when I found out the first time around. There were no tears of joy, no feelings of accomplishment nor the satisfaction of completion. Deep down I know it’s because I’m absolutely terrified that it could happen again. I remember the doctors being so sure that I would never have a recurrence after the initial sarcoma because I had reacted so well to the chemotherapy and they got good margins during the surgery and they managed to get the entire tumor, etc. I had clear PET scans for months after  my celebratory party at the hospital and I thought that I was truly in the clear. It was all over…until it wasn’t. I didn’t even get to a year of being cancer-free, just 8 months. Ironically, I had a clear PET 4 weeks before I started to feel pain in my hip, pain that I was sure was due to the rigorous physical therapy I was doing at that time after my third surgery. But as it turns out, it wasn’t the PT and a tumor had managed to grow inside my pelvis in a matter of a month.

I know I’m lucky. I know it’s a miracle I have been able to live through any of this at all, but there’s a part of me that feels like it’s not over and a fear that it will never be over. I don’t feel safe. I don’t feel like it’s time to celebrate and tempt fate. The fact is no one knows if this is really the end of cancer for me. I’m sure this is a common feeling among survivors who have had a recurrence. The fear of the unknown is almost suffocating sometimes. At this point in time, I have another 5 weeks of being homebound and non-weight bearing. After that I have to begin PT so I can learn how to walk again for the fourth time in my life. Maybe when I get through all of that and start to feel like a person again I’ll start to feel more of a sense of relief. I’m sure I will, but for now I just need to keep that little voice in the back of my mind quiet so I can move forward and live my life.

Repression is the New Black

Today I’m feeling like I’m going to burst. Like there is something inside of me that needs to be released but there’s no way out. I can literally feel a blockage. Something pushing down hard, keeping everything inside. There’s a dam built up high deep within, holding back the floodgate. I’ve tried to cry a few times but it never came to fruition. I wish I could reach inside my chest and pull out all of the weight I feel pushing me under, but I can’t. The heaviness swallows me up whole and all I can do is let it. I have so many thoughts and emotions no one can touch, no one can see. No one ever will. Things I would never want anyone to know.  I long to be relaxed, to be loose, to be carefree and content. To cast off the stone that weighs me down and to fly. To trade pain for ecstasy, fear for valor, despair for hope. This ache is too much to bear today. Every day is different when you are being held captive by your own body. A body I once loved and showed proudly to the world is now the same body I want to hide and keep locked away. I wish someone could just come and kiss this all away like it’s been nothing but a bad dream. But it’s just me. I’m alone. And as much as I wish it could be, life isn’t a fairy tale. 

Doin’ Time

It’s hard to believe it’s been 3 weeks since my surgery. I was released from the hospital two weeks ago and besides a followup appointment with the surgeon, I have not left the confines of my building. 

The 7 days I spent in the hospital were horrific, though most of it I can’t really remember because I was so doped up on morphine. The pain I experienced was unlike anything I had ever felt before. It honestly blind-sighted me, I was not expecting it. This operation made the previous ones look like trips to Disneyland and those were extremely difficult to endure. It’s kind of amazing to think about just how much physical pain a body can withstand without dying or descending into madness, At my lowest point after surgery, I was in so much pain during a simple X-Ray that I screamed at the top of my lungs and cried like a newborn child at which point I passed out and came to in a hallway an hour later. This was an intricate and lengthy procedure and I thank G-d that everything went according to plan, but with such a complicated operation comes intense pain and permanent souvenirs. This time I was graced with two huge scars both measuring over a foot in length. One running from my where my natural waist begins on my back, down my butt and onto the back of my upper thigh and one from my ankle to my kneecap on the side of my left leg. Beautiful, eh?

I cannot walk without crutches now and I cannot bear any weight on my left leg so I am essentially hopping around on my bad leg for the next 5 weeks until I can begin PT, I can’t really walk very far at all anyhow. Mostly from the bed/couch to the bathroom. Trying to write this post from my desktop computer is killing me as I am sitting upright in a chair and thus putting pressure on my pelvis, which now looks like a bicycle chain since they put so many plates and screws in to hold it together. 

Days and weeks have blended together into one big blob of nothingness. I spend most of my time heavily medicated to deal with the pain and I have the memory and attention span of a squirrel. Television is my only refuge. My mother helps me do everything from bathing and dressing to preparing my meals and sleeping in the bed with me because I’m afraid to be alone overnight. It’s like I’ve regressed back to infancy. It’s beyond frustrating to be unable to do anything for yourself, short of going to the bathroom.

Thankfully the weather has been bitterly cold so I don’t feel too terrible about not being able to go out.  But at the same time I’m dying to be anywhere but here. I feel trapped and claustrophobic often. I wish I could just stand up, put my coat on and run as far and fast as I can away from all of this. I’m definitely feeling the cabin fever set in. I know that this is only temporary and I will eventually be able to move again, but in the interim, I’m feeling a little crazy.  

I have often made a correlation in my mind between cancer and jail. You know it’s going to be awful, but at the same time you know it’s not going to be this way forever. You just have to keep your head down and do your time and one day, if you’re lucky enough, you will walk out of your prison a free woman and you will do everything you can do in your power to keep yourself from getting sent back there. 

So, do I feel like I’m losing my mind a little? Yes. Do I feel like I’m locked away from reality? Yes. Do I wish more than anything that this physical pain would subside? Yes. Do I know in my heart of hearts that this is all just part of the process and I’m actually inching closer and closer to freedom every day? You bet I do, cause I survived everything that’s happened in the last 3 weeks and the last 8 months and the last 2 years.  This is the endgame and I somehow beat cancer twice. I am a survivor. The worst is finally behind me and I can see that everything is in front of me.  The best is yet to come.

Pieces of You

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

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

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…