Oct 19, 2013 - 12:08 am
Dear Sisters and Brothers,
How is it that sometimes hope makes us so naive? I was diagnosed in 2008 with Stage 2b breast cancer. I am not going to go through all the gorey details of my fight with the disease my first time around but suffice it to say I thought I was pretty knowledgeable about the disease and all the lingo. I had so much hope that it was gone, done, never to be seen or heard of again. My doctors said it to me at every check up, "Cathy you don't have to worry you are disease free and I know you are going to stay that way for the rest of your life.". So, here I was secure in my bubble of hope, happiness and no cancer. It took only 3 1/2 years for that bubble to burst. The monster was back and from the look on my doctors faces I felt it wasn't good. They said "it's only a reoccurence in the lymph nodes on the chest wall of your original cancer." So I said okay more chemo and we will be back in remission right? No remission, very aggressive we just have to contain it so you can have more time. No remission. What did that mean? More time. How much more time? Don't know. Needless to say here I am over a year later with 3 surgeries (pain pump), 7 different chemos, 13 radiation tx and 3 hospitalizations under my belt. What did I get from all that? Metastises. And not to the bones, or lungs. or liver or brain(oh no not brain I don't have one of them) LOL. No it went to my skin. Your skin is the largest organ on your body. Breast cancer on the skin is rare and ugly and very, very scary. But I still had my hope. Why? Because all this time I still thought I had Stage 2 breast cancer. Our healthcare system gives you a sort of"discharge paper" everytime you see a doctor or have a procedure. It has your allergies, medcations, upcoming tests and your present health status. Since July 2012 when the cancer had mets to my skin up until 2 months ago my health status said "Stage 2 breast cancer". Evidently someone forgot or just plain neglected to change it and my Onco never said anything either. I guess he just assumed I knew. I didn't know. I didn't ask the right questions and in some cases I didn't ask any at all. Well that changed somewhat when the Palliative Medicine DR came to see me when I started the chemo I am on now. I was on my 1st tx and she said that I should start thinking about hospice if and when this chemo didn't work. I started to cry and I asked her to go away. And my hope went out the door with her. My chest felt like it was caving in. How can I be thinking of hospice when I am only Stage 2? Luckily I saw my grief therapist that week and I told her what had happened. She gave me good talking to about being so naive and afraid.She told me that I really needed to start asking the tough and ugly questions. I didn't see my onco for 3 weeks so I made an appt with the Palliative Med DR and I gave her "what for" because she obviously didn't notice the health status on my chart and also for the way she approached the hospice issue. She apologized very sincerely and told me that yes, I was Stage IV now. Well the world did not cave in and neither did my chest. My hope is still there and getting stronger every day. This new chemo (kadcyla) is working at least on the breast cancer on my skin. I get my PET scan on Tues the 22ndand then DR on the 23rd and hope is coming with me and holding my hand the whole way. Promise yourself when you start ths journey of breast cancer that you ask the right questions and never let anyone just assume you know what is going on. Don't let fear, anger and yes, even hope make you blind to the truth of what is going on inside your body. Knowledge makes you stronger but hope makes you hopeful and doesn't let fear and anger steal your joy. And remember "MIracles Happen Every Day" Bless you, Cathy K.