One of the bits of recommended “reading” in the Patient Engagement Design MOOC I’m taking is about The Conversation Project. The video talks about the importance of having conversations about what you want your end-of-life to look like. So that when your care givers are facing decisions, they know what you really want. I’m not sure…
I’ve been blogging a lot over the last two days, but not really talking about how I’m doing. I haven’t really said much about the side effects I’m experiencing with the Paclitaxol (taxol) and various premeds. One of the premeds is a steroid, which certainly leaves me feeling bouncy for the first two days. I’m…
I so want for my experience to be part of something bigger than just me going through cancer. I want it to be used to help learn more about cancer, or to help teach medical students, or something – pretty much anything – to make this experience something that others can learn from. I do think…
For much of my adult life, my diet has been about control. I can choose to control what I eat, and as a control freak that is important. I’ve tried several different diets to no avail. Mostly, I’ve learned that my body doesn’t like some foods and it likes others. I’m lactose intolerant but my…
So today is my second Taxol infusion. We are definitely “regulars” at the infusion center. When one of the computers started its chant, we knew what it was saying, and what to do about it. If you listen carefully, you can make out that it is saying “low power, low power, low power” … so…
I was writing a comment the other day on a friends blog post, about how I blog because I have to. I have a ‘muse’ which compels me to write something. Something will happen during the day, and an idea will spark. After thinking about it a bit, I usually have some form of blog…
My new sense of energy was unfortunately short lived. Although I must admit, I was able to get a lot of academic work done over the last couple of days. It has been interesting to see how I have been able to focus on some work, although I have yet to be able to read…
Regularly I see posts on Facebook where people count their blessings. Since my diagnosis, I have counted my blessing regularly. Perhaps the biggest blessing has been this move to California. Last summer I began to developed issues with my vision. I had cloudy vision in my left eye. Unfortunately, I went to see the eye…
“But I’m happy to be alive”. I read this a lot in breast cancer social media streams. The sense that people are going through all these invasive treatments, and that the treatments are saving them. They live through adversity and are happy to be alive at no matter what additional pains and discomforts are thrown in…
It occurs to me that after next weeks infusion I will be half way through chemotherapy. I’ve finished what for most people is the worst of it, AC chemo, and am now on Paclitaxol (taxol for short). Going into the infusion yesterday I was scared. I was afraid of the side effects of the new…
