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.
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…
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?
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.
In preparation of my impending hair loss, I decided to chop and dye my all-too-new curly mane into a short pixie. Then, after I got released from the hospital for heart palpitations due to my enemy, aka prolonged QT syndrome (bastard!), I thought why not have some fun with it before it ends up on the floor, (and well, let’s face it…everywhere else you can imagine!). I remember desperately wanting to bleach and colour my hair in junior high school, (I was heavy in the grunge phase and well, it looked cool as sh*t in the 90’s! lol). My parents would not let me use the bleach, but I did put some punky colour in my hair anyway, it just didn’t quite show up in my naturally dark hair, much to my disappointment. This was an act of rebellion and an homage to my 13-year-old self. The girl who oh-so-desperately wanted to go to Woodstock ’94 to see all of her favorite bands but ended up at summer camp instead, (ugh!). The girl who wore Doc Marten’s on a daily basis and her father’s old flannel shirts from the 70’s, (cause that is definitely the last time he wore plaid!). The girl with so much potential with a bright future ahead of her. 20 years later, I’d like to think I can be that girl again…just a little older and wiser.
I made a point today of putting away all of my many hair products and styling stuff. It’s best to get that out of the way now before it starts falling out and feels more depressing. I know, I know for a fact that it grows back. I have witnessed it first hand. That much like it says on every list of possible side effects I encounter, it is a temporary hair loss. But you know what? It still really sucks. Women value their hair, it makes them feel feminine and sexy. I have been known for my hair for as long as I can remember. People are constantly complementing me on it. That long, thick, wavy, Gisele Bundchen-esque crown of glory that I loved and prided myself in pre-cancer. My hair had become my thing. A significant part of my identity. Something I was known for. You never imagine that one day you will be utterly bald, as a woman. It was really hard to look into a mirror without crying, without feeling ugly…like I had lost my essence. Thinking that I looked sick. Someone close to me recently told me that my hair isn’t who I am and whether I am bald or not, I am still exactly who I am and that I would always be beautiful (gotta appreciate that ending!). That really helped to remind me that I am still me, no matter what I may look like. I still have the same hopes and dreams, the same sense of humor and tastes, the same feelings in my heart and mind. The same love for my family and friends, (and let’s not forget all the animals). I have to remind myself constantly that I am more than just a body, more than just hair. I am a soul, and my soul cannot and will not be altered by this disease. Cancer is not my life. Though when I am bald, standing naked in the mirror looking at my reflection , it can be pretty tough to recall. At the end of the day though, despite appearances and the situation, it’s always still just me.
Ifosfamide. The mere mention of the word stops my blood cold. I can’t think about it without my pulse racing or feeling like there is suddenly no air in the room. Or bursting into tears. These last three days since my doctors decided this was a necessary treatment has been filled with sudden teary outbursts. I feel like I am on the verge of losing at least 10 times a day, as if every emotion is just sitting on the surface, waiting to be released. I’m terrified to do this treatment again today. The first time I did it, I felt like I was going to die. I thought that if I went to sleep, that would be it. I would never wake up. I could barely open my eyes without wanting to vomit. It was honestly so bad for me that I blocked it out. Every now and again while I was in remission I would smell something that reminded me of the putrid fragrance of it and I would have PTSD-like flashbacks and immediately go into a panic. In my wildest nightmares did I ever think I would be doing this again. But unfortunately for me, I don’t really have any choice in the matter. I am praying hard that this will be nothing like it was the first time and that everything will be great. But fear and terror are whispering otherwise. I know it’s only a week and a half of my life but I’m scared, I really am. Somehow I need to pull it together and get out my front door right now. G-d please help me.
It’s officially been a week since I’ve had my first treatment. They decided to start things off with an oldie but goodie, Methotrexate. That lovely neon orange yellow liquid that is the gift that keeps on giving. To many, this is considered one of the “easier” chemo drugs. Certainly according to my oncologist who was markedly insistent about the lack of adverse affects. When I started feeling nauseated after the first hour of infusion however, I seemed to prove him wrong. As much as I hoped things would be better somehow this time around, it was essentially as heinous as I remembered it. Although the truth of the matter is, I managed to block out these feelings, sensations and thoughts. You tend to forget that what you went through was a trauma, and I don’t just mean the surgeries. The cancer itself isn’t rough; it’s the cure that’s rough. The treatments that, at times, leave you so beaten down that you are silently wishing for death or anything that can put an end to the feelings of pain and suffering. While this particular round wasn’t quite that extreme, it certainly was not easy. Make no mistake; there is no “easy” chemotherapy treatment, at least none that I have ever experienced. There was nothing easy about extreme nausea, constipation, oral thrush, mouth sores that feel as though they are being bathed in acid and full body aches so intense, you feel that you were hit by a tractor-trailer. Not to mention having to document every drop of piss that comes out of your body and doing so by urinating in a measuring cup. It’s all very dignified.
Chemo is like that bad boyfriend you keep going back to even when you know you shouldn’t. You think he’ll be different this time, that he’s really changed and things will go back to being good, but he never does. He leaves you feeling just as shitty as he ever did before. The pain is always the same, no matter how much you try to block out all of the fucked up things he did to you in the past. Chemo is and will always be an asshole. He’s volatile, unpredictable and not to be trusted with your heart. Unfortunately in this instance, you do have to trust him with your life. Because somehow he’s become your only shot.