In the last eighteen months, I’ve changed. Some of my friends tell me this and mean it as a compliment, others have told me this and it has been painful to hear. But I recognize it as true. I have changed. When I first heard that I had cancer, a little piece of me died inside. I have been grieving severely ever since. Much of the time I choose to grieve with anger. This is one of Kubler Ross’s five stages of coping with loss. A diagnosis of cancer is a loss. (you hear a lot this when you’re diagnosed with cancer). Having my disease so long, I float in and out of the stages. I don’t always recognize it as it’s happening but I do.

When I didn’t have a complete response to the chemo I knew the cancer was bad. When the first transplant didn’t send me into blissful remission I knew that it would only get harder as I was now considered to be in the refractory group. And the hus needed to feel relief. Then and now, his hope for a cure is overwhelming. After all the complications that continue after the second sct and the ptld I desperately long for my friends and family to understand the realistic implications of the continued treatment of this disease. But I’m so broken-hearted that my illness brings so much pain to the ones I love that I can’t speak freely to them about any of this so I continue to shoulder the burden of this knowledge And try to live some sort of life even though inside I cannot shake it.

Crazy thing about cancer is its always with you, following you, tainting your conversations and dictating your actions. I wonder if I, like others I will one day wake up, feeling fine, and die by the end of the day of some infection that strikes. It happens. A lot. It is not typically the cancer that kills, it’s some infection.

Since the sct I have had increasing pain. Alongside the huge burden of trying to deny my cancer and everything that comes with it so my loved ones could go about their normal lives happily I start taking larger doses of pain meds and benzos – and the illness confined me to the hospital or clinic or my home much of the time- so I have no outlet to express any of my feelings. And it just continues to build and build…and I feel even more alone. More alone than I have ever felt in my entire life.

So keeping everything inside and pretending everything was okay was adding fuel to the fire. I had so much rage inside. I was torn between fighting and denying for others. Cancer is hard enough to fight without worrying how others judge your coping. Trying to fight cancer while denying its existence is even harder. Having cancer without changing is absolutely impossible.

Ironically, this anger originated from a need to protect those who loved me (and also myself). So many times I would try to be realistic, to say I had cancer, only to be met with, “you just need to be more optimistic, happy, positive thinking….” This idea that optimistic thinking will cure cancer has been overgeneralized. I find it burdensome. How can anyone have cancer and also always be optimistic. A cancer diagnosis doesn’t suddenly make us a super hero with iron tough emotions. How did I suddenly have to become blindly optimistic after hearing the three words “you have cancer” or run the risk of dying if I failed? This idealogy is burdensome. Of course, knowing that im still fighting this ptld ebv – unsuccessfully is making me more emotional than ever, but I was also in tune to the need of others to hope and deny.

I did change. How could I not with a blow like that and no “real” support? I got angry and had no where to talk about all of this? All I could see was red blind rage. My disease is not an excuse for my “psycho angry rants”. But the fact is no one wants to “listen” doesn’t make it easy to seek help. – the clinicians don’t listen, not really, if you say you’re in pain, they refer you to the pain clinic, or even better, “palliative care” (try not to take a handful of Ativan when you hear that the first time (“not to be confused with hospice”). If you seem anxious, they just give you more anxiety meds- not suggest you “speak to someone who may be able to help”. Maybe they don’t care- or maybe they know the truth is the therapists don’t have time to listen to your tired anxiety cancer ridden painful scared ass either. Stomach hurts from the constant puking and diarrhea? Neutropenic fever and trouble breathing from the chemo and lack of blood, oxygen and ebv? Constant anxiety from the fear and your angry because it seems like no one cares? Shut up! Come on get happy! You’d feel better if you’d just be happy already…