Sorry for my silence, I find that I can’t seem, or don’t want to, write when I am depressed, and depression overtook me for a few weeks. Part of it was dealing with some chronic pain, which may or may not be related to my cancer. Part of it has been dealing with doctor’s offices, insurance companies and the everyday hassles of managing a house, a job and a family. Our home owners insurance was raised by $1000 due to our area being prone to storms. However, we haven’t had a big one in the 6 years we’ve been living here and I come to find out that they have lumped us in with the vacation beach areas. We don’t have a vacation home, but we get to share in their financial risk pool. Then our medical insurance raised our co-pays and deductibles. What we pay for our medical insurance and my co-pays just for my monthly treatments will come out to over $11,000 for the year, out of our pocket. Our yearly pay increase doesn’t come close to that. That doesn’t even count our pharmacy costs and any special tests I will have to see where my cancer is going. Nor does that count Doug’s expenses, which include a $15 charge every time he has to call into his cardiologist because his INR is too low or too high and they tell him how to adjust his Coumadin dosage. Insurance will not cover that at all. However, without insurance, just my monthly treatments alone would costs over $60,000 a year. Not that the insurance company pays that, they get discounted rates so they pay about $36,000.
***warning: political opinion*** If you don’t understand the need for Health Care Reform, think about this. We pay $8000 a year for our insurance premium, with Doug’s employer paying, I presume, a good bit more. The insurance company pays out their discounted rate of $36,000 (but remember that if a policy holder doesn’t get sick, they and their employer still pay the premiums, and the insurance company adds that money to their profit.). However, for people without health insurance, they would pay the entire $60,000, unless of course they are indigent, then they possibly get free, but maybe substandard, care that I subsidize both in my insurance premiums and my co-pays and co-insurance, or when I have to pay it all out of pocket because I haven’t used up all of my assets to become indigent yet. There is something wrong with this picture.
Taking a look at the actual bill for my treatments, I think that the office visit charge for my oncologist is very reasonable at $136 considering her years of training, continued research, knowledgeable treatment considerations and the personal care she gives me and all her patients. The cost of the care for the nurses and medical staff are also well deserved. I do question the extreme cost of the medications I receive, which is approximately 90% of the $5000 monthly treatments I get. Yes, over $4500 goes for two medications I get. I would love to know the actual costs for manufacturing them. I understand we are paying for the research and development, but if there are just 1000 other people on these medications (and I’m sure there are many, many more across the US) would $54,000,000 still not cover the cost of research and development?
When I let go of my concerns about the financial end of things, I start to contemplate my future. I think of the things I always thought I would do ‘someday’ and realize that someday will never happen. Between all the medical appointments, feeling sick and expenses, much of these dreams have been relegated to wishful thinking. Even goals to fix up my house have been tucked away into my little secret box of unessential wishes. Even with a positive outcome, I don’t know how the job market may influence our place of residence and our planned timetable for retirement is now totally derailed. I weight hoping for a good prognosis and a long time being around, thus needing to conserve funds, with planning to live each day to the fullest and realizing some of my wishes in the time I have left. But most of all, I think it is the uncertainty that bothers me the most.
When I first had cancer I was told, don’t be pessimistic, many people survive breast cancer now days. Then when it returned and metastasized, I was told, yes, this is terminal, but with new treatments, you can live with this for a long time. Now, how am I going to be strong when I don’t know how long I’ll have to be living this way? I’m sure I could do it for a few months, suck in the pain and fear, settle my affairs and put on a brave front. But, if I’m going to be terminal for twenty years, that makes it a lot more difficult.
How do I figure out what future to plan for? Do I just go on like before? How do I incorporate having stage IV cancer with planning for retirement, grandchildren, long wanted trips? What do I tell myself? Then, how do I prepare for the end? I mean, my planning will be much different if I’m going to die in a few years as opposed to a couple of decades. Sure, anyone can die tomorrow, but when you have cancer, the reality of it smacks you in the face every minute of every day.
One more bit of grumbling before I stop my ranting for today. Recently I’ve been paying more attention to tributes to people who have died of cancer. Almost always you read how this person was strong, fought a brave battle, never complained and lived each day to the fullest, right up to the end. I’ve known some people like that. And yes, like everyone else I have admired them for it. However, sometimes I feel it is just one more impossible standard to try to live up to. I’m not saying that we should memorialize our loved ones and friends by including that they were sometimes whiny, complaining, and demanding as I’m sure everyone gets to be one time or another when fighting this disease. I just wish that I didn’t make myself feel like I have to be as stoic, strong, and wonderful as I think the others were. And yes, I know this is of my own making, the quiet hero we all would like to see ourselves as. I guess I’m not going to be that quiet hero, I don’t think it is in my nature. But hopefully I can still inspire those of you reading this to continue to love, laugh and cry with me and to appreciate every day you can take a breath in and breathe it back out.
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