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.
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.
No one really wants to feel pain. Physical pain in itself is pretty bad. To me, the worst part of being in physical pain, by far, is the emotional pain it inevitably brings with it. I never really made the correlation until recently but when you are in constant physical pain, your mind starts to inadvertently go over to the dark side. Sure, you can distract yourself with T.V., books or company but it’s there. Maybe being in physical pain reminds you of the times you were in a terrible emotional state and so the old memories just start to flood back in. Or perhaps they’re always there but when you’re healthy and active, you manage to keep these feelings at bay to get through your day to day life. Unfortunately at this point in time, I am neither healthy nor active so it’s no wonder my emotional pain has seemed to return, uninvited. Sometimes it feels like these upsetting thoughts are just going to take you over, from stupid shit you know you should not be thinking about anymore, like the breakup you still aren’t over from 8 months back, to remembering when your Grandmother, who was your best friend, died suddenly 11 years ago. These were times when you felt heartbroken, helpless, lost and alone. I guess it makes sense to be thinking of these things now because much like cancer, there isn’t a damn thing you can do to change the reality of any of it and while the support is there for me during this painful time, the emotions are the same. People leave you despite your unyielding love for them and they never come back, not from the grave and not from the women they left you for. Cancer comes into your life and there’s no rhyme or reason as to why and try as you’d like, there’s no denying the cold hard truth. All of these things are deep-seated invisible hurts that one must deal with and eventually move on from, but it doesn’t really dull the pain in the meantime. I know all of these events will one day become very distant memories, for now I sit with these grievances and pray that time does indeed heal all wounds.
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.
Tomorrow is the big day. The day I have been dreading all week long. I feel like my heart is beating so strongly it’s going to burst through my chest. I know what is going to happen. I know everyone at the hospital, the nurses, the doctors the staff. I know what color the chemo is going to be. I know I will likely be visited by my oncologist, a social worker and a nutritionist. I know my mother is going to be with me the entire 6-7 hours I will be there. I know what the rooms look like, how to work the remote for the TV. That there’s heated blankets in the hallway and where all the bathrooms are. I know just about every damn thing there is to know and yet I am fucking terrified right now. I don’t know how I am going to get through this again, I’m not sure how I did the first time. I guess there are no real words of encouragement that can help me to feel better about tomorrow because thankfully, most people I know have no clue what this whole experience is like. I guess this is just one of those things that you’re never ready to begin. It’s the kind of thing you have to not put too much thought into, hard as that may be, and just do it. Like jumping into the deep end head first. I just need to hold my breath and take the plunge. I know this is what I have to do and that I really don’t have any choice in the matter (death really isn’t an option for me). I have to try to stop thinking about my past experience and hope for a brighter future. Now let’s just hope I can sleep for more than an hour…
This morning I had a new P.I.C.C. line put in. It’s a semi-permanent I.V. that they implant into your upper arm in order to administer chemo, take blood, etc. I’ve had two of these before. The last time I had one put in it was unfortunately a very painful experience that ended with me in the emergency room. This lead to me being extra freaked out about the prospect of installing another one, even though at the end of the day it’s kind of a G-dsend, (anything is better than getting stuck with needles every single day). Luckily, the R.A. who did it this time was not only super knowledgeable, compassionate and concise, he was very cute too! (Call me)
It’s a 25 minute procedure, roughly. You don’t really feel anything while it’s being threaded into the vein, aside from the shots of lidocaine they use to numb you first. After it wore off however, it’s relatively uncomfortable. They need to put in a couple of stitches to hold it in place so I’m sure that has something to do with it…that and I have a plastic contraption lodged into my vein!
While the R.A. was quite lovely, I still felt the urge to just burst into tears on the table. I managed to suppress them fairly well, but having this line put it makes things feel VERY real. Realer than I’d like. It’s bringing me one step closer to starting treatment. While I’d like nothing better than to get this damn thing out of my body, it’s still not something I feel I am ready to do. I know I somehow managed to do it before therefore I must be able to do it again, but it doesn’t feel that simple. It’s like coming home from a tour of duty during a war having seen unspeakable horrors only to be told you have to go back. Easier said than done.