Taking charge once again and chaos

I usually go along with the flow of medical care and go to my appointments like a good girl. But every so often I take a step back and make some changes.

When my therapist retired at the end of last year, I switched to a new one who I didn't like. Then I switched to another. I really don't like her and find her pretty useless to me. So I think she is getting the ax when I see her next week.

She also sent me to a fibromyalgia support group, one of the most useless meetings I have ever been to. I will be opting out of that as well. One of my big reasons is that I feel I get no support from it. And as its an official 'group' at the hospital, I have a $20 co-pay every time I go. I sometimes go to the breast cancer support group at the hospital and there is no co-pay so I have no idea why I have to pay for this one. But not any more.

Right now I have enough going on with out wasting time and money on useless meetings. Our house is a disaster right now. The only things in the living room are a sofa, a sideboard, two lamps and the tv on a tv stand. Everything else is stuffed into another room. The master bedroom is empty of everything but two dressers. We are sleeping on the mattress and box spring in the guest room which is packed full of boxes and other stuff. The kitchen is also a mess. This is all because we are having the walls painted. We hope they will be done today so we can put everything back tomorrow.

The exterior paint is being touched up. We had it painted nine years ago with a 'lifetime' paint that hasn't lasted. The manufacturer is providing new paint free of charge that was supposed to arrive Tuesday. I called yesterday and found out he 'forgot' to ship it. He swears he would ship it yesterday so we should have it next Thursday (it comes from British Columbia). I will be on the phone with him later today to make sure it shipped. Now it looks like the house will be painted the day before it goes on the market on 10/15. 

I don't need any more stress. Grrr.

Once again its Pinktober

Except I do not celebrate Pinktober. At this time of year I look forward to apple picking, Columbus Day weekend, leaf peeping, and Halloween (which is the best annual excuse for a sugar high).

I am braced for the onslaught of pinkness and really do not care for it. I will not be walking, running, shopping, or donating for anything pink. Because of Pinktober, I actually resist contributing to anything pink for the month.

And it is also Liver Cancer Awareness Month.

I think this year I will support Liver Cancer instead of pinkifying anything.

Breast Cancer Research Topics

In the middle of pinktober, after Metastatic Breast Cancer Day (October 13), I have some thoughts on breast cancer research I would like to share:

My first wish is that more money, time, and focus would be on metastatic breast cancer research. Breast cancer does not kill, metastatic or late stage breast cancer kills. The proportion of funds spent on metastatic breast cancer is minuscule. This needs to change or more and more women (and men) will continue to die from this disease.

My second wish is that more research would be done on DCIS to determine which cases are more likely to develop into potentially fatal disease vs. those which will remain benign. The vast majority of cases of breast cancer which are diagnosed are DCIS. Many of these patients are subjected to extensive surgery without really knowing if it was necessary or not. This needs to change.

Finally a cure for cancer would be quite welcome as well. According to Star Trek, a cure for cancer was discovered in the 21st century.....

When your body lets you down

It happens to all of us - you reach for something and your back twinges, you get a bad cold, or whatever, they are part of life. But then sometimes your body really lets you down.

This became very clear to me one day when I was skiing about ten years ago. I was having a wonderful time and then I fell on one run. I thought I was fine but some man stopped and said he friend had gone for the ski patrol. I thought he was crazy but since he insisted on waiting with me, he could help me untangle my skis. Then when I put weight on my knee it bent side ways and I knew he was right. I ended up with a torn meniscus and a partially torn ACL which meant knee surgery and the beginnings of knee problems.

My body has since let me down in other ways. I seem to have collected ailments that won't go away. Tennis elbow, lymphedema, bad back, rheumatoid, fibromyalgia, and that cancer crap. They just keep piling up. Yesterday afternoon I got very frustrated with myself. I try to be a normal person and then my body protests.

Sometimes I feel I should be in a geriatric ward some place with all my aches and pains. But then I try to tell myself that I got through cancer twice so I can cope through all this. But its the continued emotional spiral of coping with aches, pains and scars that is difficult.

I haven't been getting enough rest recently. Nor enough sleep. This makes it harder for me to physically and emotionally deal with life. And since we are at the worst part of the chaos of putting our house on the market (which means I will take our toaster oven with us today so it will not be in the way while they take pictures of the house). I will bring it back tonight so we can have toast in the morning and then take it with us again as they show the house. This is on top of the list of everything else I have to do today to make the house picture perfect.

My biggest problem is with everything I cannot do. I can't carry stuff around (one of my doctors told me that I cannot pick up everything after I told him we were moving). I have to wait for my husband to be home to carry stuff around for me. I get stuck and have to wait for help so often. My body is failing me too soon. And it drags me down and I constantly have to fight back.

Okay, enough whininess this morning. I will go back to being positive.

Cancer Drug Costs

These prices are out of control. Upwards of $80,000 per patient per year or treatment protocol. Yes insurance companies pay the bulk of the costs but patients are hit with 20-30% out of pocket co-payments. Since the average family income in the US is $52,000, how are we supposed to pay for this? Can you only beat cancer if you are rich? That really creates a chasm between the 'haves' and 'have nots'. And the current insurance system cannot afford them either.

There is a new call by a group of doctors, oncologists, to get a better control of the pricing set by the drug manufacturers. This was announced in a recent issue of Proceedings published by the Mayo Clinic. It was also written about in Time Magazine and there is a petition on Change.org.

They offer a substantive set of arguments for the pricing changes that are definitely worth the read. They also discuss the high costs of developing drugs that are borne by the manufacturers and how that should be changed as well. They are not just firing at the drug manufacturers but providing multiple recommendations:

"Among the recommendations are allowing Medicare to negotiate prices, permitting cancer drug imports for individual patients, and passing laws to keep drug companies from delaying access to generic drugs."

My only complaint on this issue is that they focus on cancer drugs and not on the other high priced drugs out there. In my opinion, the changes should effect all drugs.

Please go read the articles and sign the petition.