Community Blog

October 19, 2007

Be your own advocate Views: 513

I wanted to share a word with you all on being your own health care advocate. When I look around the chemo room at my cancer center, I see people sitting quietly in their chairs, eyes closed, covered up with blankets and trying to shut the world out. I see this even when the nurses are working on them, trying to start IV lines, administering chemo, etc. We all have different reactions to hearing that we have cancer. One of those reactions seems to be to turn over complete trust in your care to your doctor and whichever nurses happen to be on duty that day. I want to throw out my opinion that I think this is VERY dangerous. There have been so many times when I have had to ask the nurses to check things with the doctor, dose levels of chemo, where they have tried to give me the wrong treatment on the wrong day, when they have tried to start an IV line when I already have a PICC line, when they would have sent me home with no platelets showing on my blood test results. I ALWAYS ASK FOR A COPY OF MY LABS. This is a small thing you can do to be your own advocate. But you have to know how to read them. I always ask questions about what the numbers mean, which drug is causing which reaction in my body, and if there is anything I can do at home about it. When you participate in your own care you feel powerful over a disease that so often leaves us feeling powerless. I don’t mean any of this to sound like a bash on nurses or my cancer center. They are doing the best they can with so many patients and always have a smile on their face for me, remembering my name every time. I just feel a responsibility to help them make me better!
Recently I got some great news as a result of being my own advocate. In August I spent 3 weeks in the hospital with terrible mouth sores, doped up on morphine the whole time. It took another 2 weeks at home to recover and I lost more than 20 pounds, mostly muscle. I was doing some online research on how to manage this side effect of Cytarabine that I knew I would have to take again in November. I was on a mission to be healed in time for Thanksgiving turkey! I found some articles on Kepivance (palifermin). They have had good results preventing mouth sores or lessening the severity of them through 3 infusions of the drug before and after high-dose chemo. I asked my doctor about taking it and he said it was a great option for me but that it is normally only given to bone-marrow transplant patients, so he wasn’t sure the insurance company would approve it. Well, I just found out that they approved me to get the drug before and after my next chemo treatment (I know, insurance company does something good for a change!). I am keeping my fingers crossed that the drug works and will keep you all posted, but it has to be better than nothing. I would never have this optimism if it were not for being my own advocate.
So, enough preaching, I hope this has helped some of you. Peace, love, and power to the people! :)

Posted on October 19, 2007 at 2:53:45 PM by Josiane Dixon ( Link to this post.

Be your own advocate, Post a comment.

4 comments)

here are some links:
http://www.kepivance.com/
http://www.ufscc.ufl.edu/professional/cancernews.aspx?section=cancernews&id=38856

Posted on October 19, 2007 at 3:02:57 PM by josigirl13

You are right on, Josigirl. We are our own best advocate, especially in the fight against cancer. The medical personnal assigned to care for us are humans and limited by their own knowledge of available treatments, pharmacology, and ongoing research.

I think there are many of us here who have learned certain lessons the hard way: 1) Our doctors/nurses are not omniscient which means it’s our responsibility to know every nook and cranny of what the cancer is doing in our bodies, what treatments are available, where they’re offered, side effects, etc., etc. 2) You don’t accept any kind of diagnosis, treatment or prognosis unless you’ve thoroughly studied the information available and obtained several medical opinions.

When your body is weak from chemo/radiation/drugs and all other treatments, it’s easy to give your trust to people who are taking care of you, especially when your thoughts are uncontrollably flitting back and forth from one crazy topic to another and all you want to do is sleep…or throw up.

Consequently, there needs to be at least one person on your side who will be there to question everything for you, who is objective, and can be your advocate when you’re not physically strong enough to do the task. For me, it’s my best friend Connie. She questions EVERYTHING, writes EVERTYHING down and gets copies of EVERYTHING. Then she reviews all these at home and we discuss it, google all the info available on the Internet and write up a list of questions for the doctor.

The lastest oncologist I’m seeing is my 4th one. After seeing so many doctors in the past, I’ve developed some cardinal rules on my relationship with my doctor:

1) I have to LIKE my doctor. Life is too short to deal with a Dr. House with terrible bedside manners and is drunk on his own self-importance.
2) Doctor has to be knowledgeable in his/her field, up on the latest ongoing research and takes time with you during your appointment.
3) More importantly, doctor can never, ever, ever say to me that it’s hopeless or that “this is the end of the road for me.”

If any of those three rules are broken, that’s when I go shopping for a new doctor.

HOPE is the four-letter word we live by and it’s an absolute requirement that the doctor believes or has hope about our situation. If not…keeping fighting and keep shopping.

Hugs…Grace