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.
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?
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.
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.
Today was the start of preparation for chemotherapy, beginning with a field trip to a cardiologist to have an echocardiogram. The first time I was diagnosed and began treatment, it was found that I suffered from Prolonged Q T Syndrome, a heinously inconvenient heart defect that causes serious arrhythmias when exposed to certain medications (i.e., every medicine you can think of, I can’t take). So, my docs decided it was best to check on the ol’ ticker before they start pumping me full of poison next week.
My brother came along with me for the ride and we had our fun, making jokes and laughing as usual. I admit, even though it was a silly painless procedure, I got super anxious and shaky before we met up to leave. I imagine it wasn’t the act of going to the cardiologist that frightened me, but more so that this is day one of the journey. A journey I’d almost rather die than start again. Having him there as a distraction put my mind at ease, even though I was topless with a technician poking my chest with sonogram equipment while he was on the other side of the curtain watching a video of a sloth eating vegetables, lol.
While the tech was taking pics for the test, he kept telling me to breathe in, then breathe out and don’t breathe in again. We did this several times and then he said, “Okay, you can breathe again.” All in all it was over in 15 minutes and then we were free to leave. It was only when we stepped out into the street, leaving the hospital behind, that I felt I could actually breathe again…