josigirl13
josigirl13's Cancer Blog
October 19, 2007
I posted this on the community blog but I thought I would also share it with you, my regular readers here:
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! :)
Thanks for your support - 
Thx for all the information. Keep upthe good work! feel good. Suew
I agree with you about being your own health care advocate. I agree intellectually but so far have had trouble living up to what I know is an absolute necessity. I have tried to build a relationship with my chemo nurse but there is a new one each time. It’s true that I have had only 3 sessions of chemo but on this last session they took me to a whole other wing full of treatment rooms and other nurses. When I try and discuss my symptoms after chemo they say, very nicely, that it is a side effect and not to worry. They they go deal with the next IV machine that has an alarm going off. I also must admit that I am one of those chemo patients with a blanket and my eyes closed. The blanket is necessary because they kept it frigid in the unit and my eyes are closed because the pretreatment that they give knocks me out. I get more drugs in the pretreatment than I get in the chemo.
I also don’t have the relationship that I would like to have with my oncologist. I know that I am stage 4 but I would like to feel that the doctor is determined to see that I get more than just a little extra time with my family.
The facility at which I am receiving treatment is ranked in the top 10 for cancer treatment in the US.
The other overwhelming problem that I have now is no insurance. I have qualified for a temporary coverage under a special state plan but that expires and I must qualify permanently soon for Medicaid. I may not qualify. I had already been turned down for treatment by doctors that will not accept me since I have no regular insurance coverage. Other health care professionals have told me that they don’t understand how I got any treatment at all. They scare me so much when they say that.
So until I get the financial picture cleared up, I’m going to have to go with what I got. Not happy about it. But for me, another reality I have to deal with in my new universe.
Josi – While I can’t relate to having such a serious need to be my own health advocate – I think that your approach with this is incredible. I imagine it takes a ton of extra mental and physical energy to stay so on top of it all – but keep it up, it sounds like it is paying dividends.
My sister passed this quote on to me a long time ago – not sure if I shared it with you before or not, but seems like the appropriate time:
“In the midst of winter, I found there was, within me, an invincible summer.” Albert Camus
Love you.
I aways ask questions??
You are the one that has the last word.
Sherri
so true! so true! I had no idea how powerful we are in direction of our own treatment which effects our outcome. Take charge as much as you can or if it is too overwhelming have friends look things up for you, double check with your insurance, etc.
one more note. ASK, ASK, ASK and have someone take notes, make a list of questions for your doctor. hope that helps. cheers everyone!
nice post dude. You are a super advocate for anyone, and glad to see this includes yourself. I am so so so glad to see the treatment option for the mouth sores..I know you will be drinking gravy by the bowlful at thanksgiving. Ps, I just issued another Sox challenge.. you should forward it to your dad, aka new member of Red Sox nation.
Josi, that for the validation that your food preferences can change after cancer and chemo. I was feeling positively weird having to tell my husband every time we went grocery shopping—no, don’t buy those sweets. A few times he bought them anyway saying that he wanted them for himself. This is rarely true since he is not a big fan of sweets. Any way, most of what he purchased was thrown out and the money wasted.
I know that I must take control of my health care. But, I also need to be careful for 2 reasons. I have got to get the finances straighted out so that the medical center can’t refuse further treatment and this medical center is really the only show in town or at least the best show in town. It is ranked in the top 10 in the nation.
But, I am thinking long and hard about what you have said. Some of what is going on with me has to be denial of what is happening. After I got home from the mastectomy, while I was terrified, I didn’t begin to look for help and support to deal with what was happening. It’s just in the past few weeks that I have tried to assume control of my life. I’m getting there, I just have to escalate the velocity.
Thanks for your advice and keep it coming.