Writing helps healing

I could have written this. A woman writes about how writing helps you heal.

A few points here:
- Serious upheaval in one's life associated with lowered immune function, an increased risk of heart attacks
- People who can write about life traumas seem to have fewer health problems, recover better
- Being able to see trauma from different points of view indicates a better mental state

The author is a freelance writer so she obviously has better writing skills than me (I was told by a high school English teacher that I had terrible writing skills) and she also had breast cancer. So she wrote an article about writing your way through medical issues.

Writing is something that allows us to express our thoughts and get them out there and out of our minds. Where I work, Center for Cancer Support & Education (www.centerforcancer.org) we have offered a writing program for those with cancer for several years. This year we are adding a second writing program focused on family members and care givers of those with cancer. This idea was brought to us by a journalism professor who said that she sees it in the kids that she teaches - their emotions come out in their writings and often they are about someone close to them who has or had cancer.

These are more formal opportunities for coping with the emotional aspects of cancer. But then there are blogs (like mine), or CarePages (www.carepages.com), many other services, and even written journals where people write their thoughts out. Many of them are started at their diagnosis and continue only through treatment. Others are continued for years (will I ever stop????). Others end badly, with a post by a family member of the unhappy ending.

But the written expression helps thousands each year in coping. It is not right for everyone and that is their personal choice. But emotional venting in writing seems to help us heal so I'm going to keep going.

Back on the Avastin debate

Last year I blogged about the Avastin debate where it was shown that it did not help women with advanced breast cancer. Now it down to the wire, there will be a meeting next week which will probably pull the plug on its use as a breast cancer drug.

But there are patients taking Avastin and claim it has saved their lives. They claim they benefit from it and don't want it pulled.

What is wrong here? I think lots of things.

- While Avastin is a promising drug in treating some cancers, it is not working to treat breast cancer. There is lots of data behind it saying it does not work.

- The patients who are receiving it, are they really benefiting from it? Or are they experiencing a placebo effect - maybe a few but not so many? Or is something else they are doing causing the decreases in their cancers - are they undergoing other treatment or did earlier treatments continue to have an effect?

I am not doubting either group. I can clearly see that there are some people benefiting from Avastin against their breast cancer. But I can also see some scientists who are looking at the data, which doesn't lie, and saying it doesn't work.

So I think that this clearly shows the gap in understanding about cancer. If more was understood about cancer, then there would not be two sides saying different things so strongly. I believe the patients when they say they are improved but science is saying they are wrong. Back to the research lab for the scientists.

An additional comment on Avastin is why does it cost so much? $88,000 for a full year of treatment sees a bit beyond what is affordable. If they go back to the drawing board for Avastin, I would like to see a bit of justification for its costs.

I am a statistic

The state of Massachusetts keeps a list of cancer statistics on their website. I am not entirely sure why we become statistics but we are.

In the town I live in, there were 197 cases of breast cancer in the five years 2003-2007. There are 196 other women like me in the same town. I probably know 15-20 of them so we can be statistics together.

The National Cancer Institute publishes data on cancer rates on their site which now go from 1975 to 2008 so they include both my cancers.

The American Cancer Society also posts a lot of data on cancer including deaths through 2007 and estimated new cases for 2011.

When I was diagnosed in 2007, all the data available was through 2002 or so. It was rather disappointing because that wasn't what we wanted. The biggest reason for the delay is not only do they have to count all of us but they had to wait for the five year survival rates to be compiled.

Unfortunately, the National Cancer Institute only has limited statistics on five year survival rates for diagnoses occurring through 2007. So we are getting close.

Because face it, all we want to know when we are diagnosed with cancer is:

'What are my chances', 'Am I gonna die?' and 'How soon?'

The numbers, of which there are lots, are never satisfying. The old data does not give us the current story. We are told they are based on the treatments that were available at that time and not on current treatment protocols which are better. It is rather frustrating but we are forced to be optimists.

Germaphobia

When I started to go to the fancy gym, other than the fact that I am one of the younger people there, I decided its full of germaphobes. There is a big dispenser of towelettes and most people carry a couple around to clean the equipment after they use it (and sometimes before as well). I have never attended a gym with such a huge group of people focused on germ control.

To be cool and fit in, I try to remember to grab a couple towelettes and carry them around through my workout. I admit I am not as conscientious about using them as others are. There are some who don't touch anything without a towelette between them and the surface. I think they are a bunch of germaphobes who are moving the germs around with the towelettes. I don't really think they do anything.

What I do is to wash my hands before I work out and again after I work out. I think that is much better than the towelette option. The towelettes don't do much for removing germs - maybe just move them from equipment to equipment. I prefer to think that hand washing will prevent me from bringing in the germs and also from taking any more home with me.

I know there are all sorts of nasty germs and the worst ones to get from gym equipment are MRSA - drug resistant infections - that can eventually kill you if you aren't careful or have a compromised immune system. During flu season, I think gym equipment can be a good source of flu germs. I also think if you need a petri dish of germs gym equipment along with grocery carts will provide a good source of germs.

Myself I am more worried about cancer cooties than germs. Most germs have cures. Cancer cooties have been proven to cause long term health issues, cause the use of medications with nasty side effects, surgeries, and lots of medical adventures and have a high death risk associated with them.

But since we don't yet know how to cure the cancer cooties I'll stick with handwashing as my first line of defense.

Mail delivery

Six days a week the mail shows up at our house In the summer it comes through the mail slot in the front door (which sometimes scares the cat when it wakes him up from his nap). In the winter, we seal up the mail slot and hang a little mail box in our front entry way.

We get the usual assortment of bills, junk mail, catalogs, and sometimes real correspondence from people we know. But I get the medical stuff too. By medical stuff I mean the hospital bills, health insurance claim statements, and appointment schedules. Usually a few times a week.

Yesterday was an unusual pile of mail. My husband got a letter from his mother. We got one catalog to recycle. I got:

- one appointment reminder for an upcoming blood test
- two hospital bills
- eight insurance statements
- one list of my next ten appointments
- one notice from the bank about an upcoming CD rollover

I felt like a sick person... The blood test notice belongs with my other blood test notice which is due after July 11. I will get the both on July 11 so when I go to the doctor on July 14 I'll get the results and their significance.

I looked at the hospital bills. If I was a good person I would go find the corresponding insurance statements and match them up but the insurance has a habit of reviewing and changing payoffs and then the hospital audits things and sends me a check back for my payments and I get all confused so I am not a good person. I'll just pay them eventually.

I scanned the insurance statements to see if the dates agree with when I had appointments. Eventually I'll enter them in my medical expenses spreadsheet so I can claim a deduction on my taxes. However one didn't look right - it was coverage for a dental appointment. I didn't have a dental appointment in June. I thought I would be forced to call the insurance company to figure it out. But I googled instead. He's not a dentist, he's a cardiologist and he read my recent test results - so that does make sense.

I have another ten appointments coming up over the next month or so. Thank you for sending me a reminder. I wouldn't get there without it. I also know that I'm sure to get another reminder as soon as another appointment is scheduled, always showing the next ten appointments. the only difference is the time period covered. Sometimes ten appointments is one month, sometimes its several months but there are always ten.

I'll figure out the bank thing later. In the meantime, I'll be a professional patient, as always.

But its scary!

In the UK, more people find cancer scarier than unemployment, knife crime or debt. Well obviously, they are a bunch of underprivileged people who have not been lucky enough to have cancer.

I have had cancer twice, but I've been laid off four times. We have a giant mortgage so that counts as debt. I have never been the victim of a knife crime (ouch) and I'm happy to stay that way.

So is it fear of the unknown? The curse of the C-word? What doesn't kill us makes us stronger?

Last weekend I was at a booth at a local council on aging event for taking care of elderly parents for the cancer support center where I work. I found it pretty humorous when the octogenarians would stop by the booth and find out that we provide support services for those with cancer. Some stopped to learn more and others would say 'no, I don't have THAT' and keep moving along on their walkers. They were very happy to say they didn't need our services.

Its a matter of perception I think. I mean what could a doctor tell me now that is so scary? I have been told twice 'you have cancer'. What else can they tell me that's scarier? I know there are other diseases out there without cures that I am happy to skip. But they are running out of bad news to tell me.

I think I find unemployment, debt and knife crimes just as scary as anyone else.

Keep your nose out of my prescriptions

Recently I blogged about how pharmaceutical companies use prescription records to better market their drugs to doctors. I don't like that idea.

Up in that logically thinking state of Vermont, they enacted a law in 2009 to prevent this. It was just voted down because it violates the freedom of speech rights of the data mining and pharmaceutical companies. Excuse me, what freedom of speech rights are involved in obtaining data on prescription records? And what about my rights to privacy? I don't think that just because they encrypt the patient's name that does that much.

I think if the companies involved are allowed to use this data, patients should be given the right to opt out of allowing their data to be used. Just like the Do Not Call registry allows us to block unwanted phone calls, we should be allowed block companies from our data.

Now, speaking to the big companies directly, "I am taking your damn prescription medications because my doctor thinks they are right for my (multitudinous) ailments. I don't want my doctor to change my medications because of your marketing. Every time one prescription is changed, my other ones have to be reevaluated to avoid interactions and incompatible combinations. I don't care if you are trying to improve your bottom line, I am trying to get better. So BUTT OUT! Thank you."