Friday, July 26, 2013
Wow. Wow. Wow is what I think of the book The Emperor of All Maladies- The Biography of Cancer. It is a must read. Even though I knew some of the history of how barbaric medicine has been, I cringe as I read it, the details. The people who had the cancer, how much they suffered and endured for the future of cancer. Here is some of my thoughts so far-- I am about half way through. It is striking how young cancer research and knowledge is, and in my opinion still is. The most shocking thing is that this is a history of cancer and starts at the beginning BUT as I am reading, it is like it could have been talking about cancer NOW. Amazingly, the doctors say and think just as they do now. It is the same attitude and over confidence and promise of "a cure is in reach". I swear I see a news article every week about some great new promise of a cure and THIS is the way to cure cancer. The theme over and over is the doctors holding fiercely onto whatever theory they had and not moving forward and very skeptical of doctors who have a different idea and it taking such a long time to over turn and try new things. It is amazing how much of those ideas are still deeply held. I have encountered that in my cancer treatment. There is new thinking from doctors that are doing studies about people *like me* who have a complete response to chemo and radiation that surgery may be skipped or delayed and do a "watch and wait" approach to such radical surgeries. The 4 surgeons I saw all dismissed that option as crazy and not wise and wrong and basically implying how no doctor should agree to "watch and wait". I even had a falling out with my doctor over this (refusing surgery). The other thread in the cancer history always seemed to be more and more, more surgery, more chemo drugs. If a little was good OR bad, more had to be better. The section on cancer prevention was very revealing--we are not trying to prevent cancer, the money is not funded for that even though "the only intervention ever known to reduce aggregate mortality for a disease--any disease--at a population level was *prevention*." The section about smoking and the non accepting fact that smoking can cause cancer and how the tobacco industry did everything to not let the connection be made and deceive the public makes me think or the formula companies. They use deceptive marketing practices throughout history and *currently* to deceive the public and have no care about putting the health of babies and moms at risk and continue to do so and fight it despite the overwhelming evidence that formula causes illness and lack of nursing by moms causes illness in *moms* too. But, it is a business and profits come first, not health and not prevention. Both tobacco (was) and formula (is) advertised in medical journals touting how great they are. Can't wait to finish the book, wonder how it ends. ********************************************************************************* A few days ago I had a dream that seemed so real-- I could walk without it hurting. It seemed so real that when I woke I really thought just maybe it won't hurt anymore, but of course it wasn't so.
Monday, July 1, 2013
Having another sick day, which leads to my kids seeing me feel yucky and in pain. It gets me down and mad and I blurt out to my son who is is 11 years old and in the car with "Do you remember when I was well? I wasn't always this way! I used to be normal and well!" He answers, "No, I don't remember anything except this." AND he was 8 years old when I was dx! Is it that he really was too young and can't remember anything OR is it that this cancer has taken away and even erased all that was normal and well of me. I have three children younger than he was at the time of my dx so surely no hope they remember me BEFORE. Should I even ask my two children that are older than him if they remember me BEFORE? OK, typing this in a public place, must stop crying! At least I am in a hospital where it would be ok to see someone crying. But I HATE crying!! I am so sick of ME crying but I can't control it, like I can't control anything else that is wrong with my body. I once was thin, and happy, and not a worry about bathrooms, stomach pain, foot pain, or cancer or dying. All of me who they now know is a fat, sad most times, in pain, running to bathroom, can't walk far mom. I really used to be a good mom and now I am a horrible mom. I hope they know one day that I am trying my hardest but it is so hard for me and this is the best I can do. I will have a few days that are "ok" (I would not say "good" days, far from it!)and then I will think maybe I can be ok and then the real bad days happen and sends me back to "Knock, knock sucker, don't forget you have cancer and this what you get to deal with." This is the price of cancer treatment. My friend said she survived cancer (so far) but hasn't survived the treatment. THAT is SO TRUE! I live everyday (yea I'm alive :-) ) with the constant ongoing side effects and that gets me down so much. And to educate you all- cancer is NOT the same cancer for everyone and treatments and side effects can be SO VERY different. And just because someone is done with treatment DOESN'T mean the side effects are over.