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To everyone who posted in response to my question, and especially for Cary's answer, I just want to say thank you.
In particular, to those who have suggested working towards universal healthcare in this country, and to volunteering my time to a worthy organization such as Gilda's Club, I think that's exactly what I need, and am going, to do.
I'd also like to thank those who have shared similar stories. One thing our healthcare system is good at doing in this country (if you have insurance!) is healing. What it is not so good at is helping you afterwards. That is where reaching out to others who have gone on the same journey seems to be the important step that I was missing.
My job, for the time being, is simply what it is. I realize I have to look elsewhere for fulfillment and purpose, and to be grateful for all I have.
but my mom passed away some time ago from cancer, and I recently had a biopsy scare. I keep thinking that I shouldn't have to get sick to appreciate what I have and evaluate what I can do to improve it, just in case I have to deal with that situation firsthand.
At this point I pay for my own health insurance through the Freelancers Union (http://www.freelancersunion.org/), and freelance using temp recruiters. This might be a great solution for the time being, while you decide what you really want to do. You can earn a decent living while having the opportunity to take a few weeks in between (or more or less), and but you won't get that feeling of dread that sometimes happens when you begin a full time job (because you won't be there forever)...if you live in the United States, you not only lack the universal coverage option, but vacation days are few and far between.
Don't pressure yourself into trying to make a difference, since depression can make getting through the day a major achievement. Perhaps you can just try switching your priorities gradually.
My dear wife Karen also had an aggressive form of cancer. She was in remission when I met her, but she too knew that it was just a matter of time before the cancer reappeared.
Here's what Karen did with the rest of her life: she married me, traveled, rested, watched T.V., played with her dogs, bought shoes and did whatever she wanted, whenever she wanted.
Most importantly, Karen got involved in Gilda's Club, an absolutely wonderful cancer survivor's group. She volunteered at Gilda's every week and helped lead a group called "engaging the spirit". She specialized in counseling other cancer patients about living with the fear of recurrence. And she got reconnected with church. Both of those moves were invaluable in her remaining life.
Karen's job allowed her flexibility. In fact, her job ended --- --- something that crushed her. Shortly thereafter, her cancer came back. But lucky for us, my insurance covered her final treatments. But Karen always realized there were more important things for her to do than worry about work. Her job was taxing, frustrating political job. She was brilliant at it. But she never let it control her. Frankly, I was glad it was over before her cancer recurred. I think she'd say the same thing.
Karen lived a completely fulfilling seven years after her first cancer diagnosis. She touched the lives of hundreds of people during those years. And when she breathed her last breath on April 26, 2007, her death was resolved --- there was nothing left for her to do but be at peace. And she was.
Dear LW,
My heart goes out to you. I have personal experience with some of the financial challenges that you face through experience with my sister, who was diagnosed with cancer in 2006. You may not have as much flexibilty as you would like, but it will be useful to explore your options. At least you will know that you have "turned over every rock."
I'm not sure where you live, but the American Cancer Society has a huge network of support. If there isn't an office near you...dial 1-800-ACS-2345 or log on to www.cancer.org. I used to work there, and they have a lot of caring professionals. Their phone line is available 24/7.
Try Gilda's Club if you live near one. The Lance Armstrong Foundation could be of use. There are also a number of "disease-specific" organizations such as Susan G. Komen for breast cancer and the Leukemia and Lymphoma Society that could be helpful for you.
Hang in there, dear LW. You have survived for a reason and my hope is that it is revealed to you soon. Although (as many have noted) the health care infrastructure is broken, there are people out there who would love to support you. Unfortunately, it takes a bit of effort to find them, but they are there.
My prayers are with you as you continue your journey.
I am another survivor who had 2 surgeries, 2 sets of chemo, and many hospital visits. That was 17 years ago...I had a 35% chance of survival at the time. Obviously, my treatment took and now I am as well as I treat myself on a daily basis.
Things don't really change that much except if you want them to change...if you have the energy. Give yourself time, eat great food, drink great wine, laugh with friends, and don't take life too seriously. Enjoy yourself.
You complain about the other people whining and tell everyone to get over it yet every letter you write is angry rhetoric blasting some group. Get over yourself, having your world turned upside-down can be difficult for people, perhaps you are perfect and emerge from every problem unscathed, a lot of people dont and need help and guessing from the anger you need to vent in various letters sections you are one of them.
I wish all the best for the LW and gthe rest of the commenters who have went through similar pain, thankfully Ive yet to deal with any catastrophic illnesses (although I am fairly young), with the exception of various pre-melanomas, which cant compare., I cant imagine how it felt. For my limited knowledge and advice all I can suggest is for you to try and be happy and live your life, dont give up everything in hopes of finding meaning but I guess find meaning in the little things and if you are truly unhappy doing anything you need to change it.