Personal Disease Perspectives--Blogger Challenge

My friend Piper just posted a blogger challenge on disease perspectives and I decided to chime in from the perspective of a spouse of someone with CF and also as a cancer patient. Here's Piper's challenge and full post. Here is her specific challenge:

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog. She also opened it up to non-CFers, which is where I come in

Life as a CF wife

It was hard watching my husband struggle with CF and the issue of "compliance" was often a prickly one. There were times when I would get really upset with Gessner for not doing his treatments and there were times when I wondered if he would less sick if he was more diligent about treatments. He worked too much and sometimes took chances with his health. He fought with his doctors and sometimes pushed the envelope. It was frustrating to watch and honesty it scared me. But it also let him live. He chose the terms of his life as much as he could. He chose what he saw as a "quality" of life at the expense of treatments sometimes. Other people might disagree with those decisions, but the bottom line was that it was his decision and so it was the right decision for him. I do wonder if he would still be here if he had been more "complaint" or more conservative. But, that wouldn't have been Gessner and that wasn't the way that he wanted to live.

I think that each person has to figure out the balance that works for him or her individually. For some, it is doing everything possible to try to be compliant and follow doctor's orders to the letter. For others, it is less strict and is more about making the rules. Neither is right or wrong--each person has to do what is right for them and I think that doctors, family members, and friends need to respect those decisions. I know that it is hard because as witnesses to people suffering from this disease, we feel so helpless and pushing compliance is a way that we can feel more in control. But the bottom line is that there are no guarantees with CF and everyone has to make the most of out life, whatever that means to that person individually.

As a cancer patient

It's quite strange to go from being a caretaker and wife of a person with CF to a cancer patient in just a few months. Experts guess that cancer is lurking at least 5 years before it shows up, so I have had it for some time, but we never had any clue. One of the most difficult things for me to hear from people is that they are not surprised that I have cancer after what I have been through. I understand where that thought comes from--there is evidence that stress and particularly feelings of helplessness can contribute to cancer--but at the same time it makes me feel like people think that I caused my cancer or let it happen to me. Yes, I have not been the most healthy, but I am freaking 33 years old and I just can't accept that this disease is my fault.

I have been a pretty compliant patient, but have not done everything possible to fight this. I still eat sugar and meat. I had someone recommend that a fast for weeks--I'm not doing that. I haven't done any juicing yet. But I do listen to my oncologist and do my treatments. I walk and do my exercises. I see a variety of therapists and I try to listen to my body. I sleep when I feel like I need to and am getting better at asking for help. Am I the perfect patient? Probably not. But, I am doing what I can and doing it the best that I know how. Will it be enough to beat this? No one knows, but I hope so. Should I be judged for not doing more? Nope. All anyone can do is what he or she decides is best. You can consult the experts, but at the end of the day the decisions have to be right for you. Sometimes that means bucking the system. Other times it means toeing the line. Most of the time, it is probably somewhere in between.

I have been fortunate to have a support system and care team that supports me completely and I do not feel judged for my decisions. I feel like I am taking advantage of the expertise and programs available, but also trying to manage my life and still have one in spite of a cancer diagnosis.