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."

Medical round up

- This is in the category of 'if you can't cure them, confuse them'. One of the locations of the hospital I go to has decided to renumber their floors. They used to be 1, 2, 3. At the main hospital you enter on the 4th floor. Go figure.

- At PT for my knee yesterday, I told the therapist I was trying to figure out the best way to keep working on strengthening my knee with out causing more pain from the bursitis in my hip. She told me that due to the pain caused by repetitive industry, she doesn't think I have bursitis but arthritis and should talk to my doctor about testing for osteo vs. rheumatoid - which runs in my family.

- I'm cranky because I am waiting for my doctor to call me back - she was out on Tuesday and went home sick yesterday. When I called again yesterday, I was told that it would be referred to the doctor on call if my doctor is out again. I am not in a mood to wait.

- The latest news for women with breast cancer has its ups and downs. They are working on implanting lymph nodes to help with lymphedema but its still in the testing stage. However the FDA now says that silicone breast implants should only be expected to last ten years because of rupturing issues, along with that increased risk of lymphoma.

- Don't go to the hospital in July as they are filled with new residents who don't yet have a clue. If you do have to go to the hospital in July, ask a nurse to make sure the resident knows what they are doing.

- They still do not have a cure for cancer but claim they are getting closer.

That's enough for this morning.

Change and the FDA

Finally, we might have some progress on the standoff in the blame game - insurance companies blame hospitals who blame big pharma on the reasons for high medical costs - or is it vice-versa? I have chemo brain I can't remember but you get the point.

Now biotech is trying to work with the FDA to change their mission to help speed up the approval of new drugs. On one hand we have biotech who wants to get things on market faster so they can start making some money - no problem in that. It helps reduce their overhead and makes drugs less expensive to develop. On the other hand, the FDA is cautious about approving drugs too quickly so we don't have more 'Vioxx incidents'.

I can understand both sides and I am glad to see that they are taking the stance of we need to change the overall mission of the FDA. Patients need safety. There is a huge overall burden of cost resulting from years of drug development, testing and trials to meet FDA requirements. However if there is a way to alter this that doesn't cause harm to patients or increase costs in the long run, I am all for it.

I am glad to see that this is recognized as a fundamental change needed. Government agencies, and other large organizations, can get buried in red tape and if every so often they take a step back and say 'let's simplify life for everyone', change can happen and reduce the red tape at the same time.

Next on the list is insurance companies. Hmmm..... finger tapping, tap, tap, tap.... what can we change about them? Profits? Denied coverage? Control over allowable procedures that are medically necessary? Don't get me started. Its too early in the day. But they are next.

My medical advice

I have decided that it is time to share my medical advice - garnered from years of being a patient. I never went to medical school and still close my eyes any time a needle is near but I do have my opinions (of course I do, if I didn't have an opinion I wouldn't have anything to write about in my blog).

- Medical advice from your doctor is in the same category as speed limits. It is your choice to heed them but if you don't you may end up paying a price. I do listen to my doctor and usually follow their advice but sometimes do not and then I tell them about it. If you just ignore the speed limit and your doctor's advice you may end up in a different category - dead.

- Hospitals are no place to get any kind of rest or personal attention. They are places to get poked and prodded and monitored and finally, luckily, you get sent home.

- The biggest lies in the medical industry are: 'you might feel a pinch/pressure/discomfort for a second', 'after a short recovery, you will be ready to go home', 'most people experience improvement within 24 hours'.

- The things they don't tell you before surgery or other medical adventures: how much pain you will be in, how long until you feel like your old self, and what your scar will look like.

- The more medical adventures you have the less modesty you retain.

- Your insurance company will always try to interfere with your medical life in someway - by when you can refill your prescription, which procedure you are privileged to have, and when you can see your doctor.

- You need to be armed for every doctor visit with your list of medications, list of questions to ask, and sometime to occupy your time - book, newspaper, etc - while you wait. The less you have to occupy your time, the longer you will wait bored out of your mind.

That is the sum of my medical knowledge. I am happy to share. If you have anything else to add, please let me know.

Screening tests - good or bad?

There is a little furor (debate, discussion, disagreement, shouting match, hoo-haa, to-do, etc) going on regarding screening tests. First of all are the disputes about which tests should be done and when - mammograms at 40 or 50, prostate checks - are they worth it, and more. All sorts of meetings are going on around the country and doctors and specialists and other 'important' people are arguing about it and some even are quitting their jobs over them.

Well, they can argue all they want because I don't want to get into a discussion about whether they are important or not because that's not my business. And 'with your medical history, they need to be sure', so I get them all anyway. (Well not the prostate checks, but the rest of them.)

I think its great that they will be free to encourage people to get them annually. I think a lot of people look at it as a cost savings or just as incentive not to deal with a test or a big needle (or a camera somewhere it doesn't belong). I mean if someone says go have this test and it will cost you $100, people can quite easily say 'no, I don't need it'. But if they are told, go have this test and its free, they are more likely to agree.

So now people are speaking up, if you have this free screening, if they find something - WARNING - it will cost you money. Ahem, isn't that the point of screening tests? To catch them before you end up having something nasty and really expensive?

I agree if you have a colonoscopy and they find something that needs to be removed and tested, you have left the 'free test' zone and have moved into the land of 'medical bills'. The free part is the test. The not free part is the 'we found something before it was bad'. But perhaps, they should be a bit more explicit in saying 'if we find something, it will cost you' (and not just in your wallet). It really means, welcome to the medical roller coaster and if you are lucky you can get off it after the results of the biopsy.

The point is the screening test is free but not the testing that might result after. Get over it. That means they caught something before it killed you. To put it bluntly, would you rather be out a few hundred dollars or dead?

As a poster child for the results of screening tests and heeding medical advice, I can tell you they are worth it. I may not be rich but I'm still here.

Old friends

Recently I have been catching up with high school friends on Facebook (that evil time suck). Some one posted that a former classmate had died of breast cancer in March. Then another posted that another had passed away last fall. I asked how/when and one classmate told me what she had heard and another classmate told me he died of AIDS. I replied to him that AIDS and cancer aren't picky about who they pick. It turns out he is a 12 year volunteer with ACS' Relay For Life. It was only then that I told him about my fun cancer adventures.

A few months ago I reconnected with another high school friend. It turns out he successfully battled testicular cancer ten years ago and is now fine. After he told me that, then I told him about my adventures.

Yesterday I went to a party where there were some friends I hadn't seen in more than ten years. I didn't talk about my health because I didn't want to spend the afternoon talking about it. I preferred to talk about other topics. Then the conversation took a turn on to that health topic. I still didn't say anything. I just didn't feel like it. I felt it was irrelevant to talk about my medical adventures.

Why? Back when I saw the people at the party on a daily basis, I would have opened up a long time ago as they were one's who knew me. They knew about my health issues then. But now? I don't know. Did time pull us too far apart? I'm not sure, I promised to email some and stay in touch. We'll see.

Just say no to drugs

I hate taking medication. I really do. I think one's body is a machine that should be able to run with out 'help'. I take as few as possible - currently five daily - and I consider that way to high. I do keep doses as low as possible and refuse additional ones unless needed. I do admit to taking antibiotics recently for a toe nail infection.

I don't understand the people who go to doctors wanting more drugs or treatments. But apparently they exist. I think of these people as the one's who will end up robbing a pharmacy for their Oxycontin or something... Michael Jackson is an example. He had insomnia and had his own personal doctors travel with him to keep him supplied. That's a bit over the top.

I recently had a conversation with my therapist. She had switched me to a new anti-depressant and after a month when I seemed to be doing okay, she said she would double my dose. I asked her why and she said that is normal protocol. Well, maybe its normal but not for me. I told her I did not want to and we had a small disagreement. Finally we left it as I would keep the original dose and call her if I felt it needed to be increased.

I don't understand this. If I could skip the drugs I take, I would. I am on anti inflammatories and pain meds for my back. I take synthetic thyroid medication as I don't have a thyroid. I take an aromatase inhibitor to prevent breast cancer return. I take an antidepressant. I also have back up meds for more pain if needed.

I am not trying to fund the pharmaceutical industry but sometimes I seem if I am. My response if offered additional prescriptions is do I really need this and why? A friend calls it 'better living through chemistry' and while I do see some value in that, what if there was a world where I didn't have to take anything? I could just say no to drugs.

How we really eat.

We have our new recommendations on eating right that came out at the beginning of the month. But now real American's have put their slant on it. How we really eat. Face it we are creative.

This is what I will eat today. My breakfast plate will consist of coffee (half decaf with skim milk), a piece of fruit, egg beaters and toast. My lunch plate will be left over Chinese food of brown rice and chicken with peanuts and vegetables. My dinner plate will be salad and chicken quesadillas - which will have onions, scallions, chicken, salsa, and cheese.

Somewhere in there will be a little chocolate too. Maybe I'll have left over Chinese for breakfast and have a sandwich for lunch.

I don't know. I hate following the rules. I like to eat what I like. Everyone has their own version of what they like to eat. We just need to use some common sense and skip the junk.

A friend was telling me her sister was on food stamps and she couldn't buy prepared anything. She had to buy ingredients and make things. I thought that was a great idea. Too bad food stamps don't come with cooking lessons.

I think the people who make up these rules assume a couple things about us:

1. We all know how to cook. Not true. I can cook. I know other people who don't.

2. We follow the rules. We don't. People do eat things like Poptarts and cake.

3. People have time to prepare meals. Not true. How many times have you grabbed what you could and ate it in your car on the way to some place you had to be.

4. We plan our meals and then we actually eat what we planned. Nope. I may have left over Chinese for breakfast instead of my planned healthy meal. Its not even 7am and I'm making changes.

I am ready for convalescence

But first the latest in breast cancer detection is a sheep. Yes, really. Read more here.

So after cancer, there is depression and anger and all sorts of other emotions. The Victorians did one thing right, aside from introducing extreme modesty to piano legs (that's why everything was draped - so legs didn't show), after a significant illness they sent everyone off to convalescent clinics in the Swiss alps or the Adirondacks or some other remote place. This allowed emotional recovery from the illness as well as physical.

Now they say 25-40% of those of us lucky enough to get cancer suffer from depression. Who would have thunk? I mean you get the biggest shock of your life, deal with surgeries, chemotherapy, radiation, and all sorts of nasty tests and procedures, and you get depressed? I mean who wouldn't? You are bald, fat/thin, feel like crap, look like crap, and are trying not to lose your lunch. What do you get in return? More fun medical tests and procedures on a regular basis.

I think what I need is a convalescence where I don't have to go to the doctor, I don't have to have medical adventures, and I can actually start to get better and possibly have no new medical diagnoses. A long vacation is really what it is. That would be perfect.

On how many levels is this wrong?

A woman was diagnosed with cancer and a relatively bad diagnosis. Her husband asked his boss for flexibility so he could attend treatments with her and offered to work nights and weekends. He was terminated as a result. How wrong is this?

Now, as the article says it may not be illegal but it certainly is not moral or ethical.

A long term employee made a request and it was declined. They now have to replace him and will bear a burden of hiring and training a new person. I bet the transition will cost more over time than keeping someone who is working odd hours. Never mind what this will do to company morale. Maybe others will leave as a result as well. I mean what if one of their family members got sick and they wanted some flexibility to take care of them? They would have gotten their answer in this episode.

I would never work for that company or do business with them as a result of this action. Who wants to deal with a company who treats people this way? What would you expect from them in a business deal if this is how they do business?

Do you think their business will take a hit as a result? I think so. If you read the comments online apparently they took their general email address off their website - probably as a result of being inundated.

A few of the comments refer this as being a need for national health care. Its not really. Its a need for common decency.

Assuming there is another side to the story, the company was asked for their point of view on this. Their only statement is that it is a private personnel matter. Well, its not exactly private any more so to protect their business they need to do some damage control.

This is so wrong. I hope he gets a job soon as a result of all this publicity. I hope the company takes a hit in the bottom line. I hope the woman who fired him is disciplined in some way - even let go herself. And if I was him, I would not want to go back to the company. Ever.

The blame game

New cancer treatments, often chemotherapy, are being developed that are available in pill form. This is easier on the patient that IV, does not require long hospital visits for infusions, and should be less expensive overall. But they aren't necessarily cheaper.

One in six senior cancer patients are not filling their oral chemotherapy prescriptions and the thought is the cost. One woman was told that she should take an oral chemo for her kidney cancer but found out the co-payment on medicare was $2400 - which she could not afford.

And the blame game begins: "Private insurance companies that deliver the Medicare prescription benefit say the problem is that drug makers charge too much for the medications, some of which were developed from taxpayer-funded research. The pharmaceutical industry faults insurers, saying copayments on drugs are higher than cost-sharing for other medical services, such as hospital care.

Some analysts blame the design of the Medicare prescription benefit itself, which allows insurers to put expensive drugs on a “specialty tier’’ with copayments equivalent to 25 percent or more of the cost of the medication."

So with which part of this system do you not have a problem?

Isn't insurance supposed to help pay for medical costs? Are the pharma companies a bit too rich these days? Perhaps Medicare needs to take a look at how they cover prescriptions? I think all three parts need to be fixed and they should stop playing the 'blame game' and grow up and solve the problem before more people die at their doorsteps. Sorry for the harsh word but that's the reality.

I did a good thing this weekend

I spent the weekend volunteering at Casting for Recovery. CFR is an organization based in Vermont which provides fly fishing retreats for women with breast cancer - no matter what stage or how long since their diagnosis. Its a great weekend to meet other women with the same disease and learn a new skill. You get to go once as a participant. If you haven't signed up, do so at www.castingforrecovery.org and you will have an amazing weekend.

I went in 2008 as a participant. Then I went back in 2009 and this year as a volunteer. Its almost as good as being a participant. Its a way of giving back for me. I enjoy it.

We were at St George's School outside of Newport RI on a beautiful campus. We could see the beach - down a big hill. We ate in a dining hall that looks like it was the model for Hogwarts. I am not kidding - big long tables in rows with hanging flags and chandeliers. It was missing Nearly Headless Nick flying around. The chef was amazing. All of us who were there are now on a diet as a result. They had the most amazing chef and as they were closing for the summer we got to bring home left overs - too bad my husband didn't like the mushroom soup I brought and I had to eat it all myself.

I try to do good things fairly regularly. It makes me feel like I am doing something positive. Cancer doesn't have to be a downer all the time. If I hadn't had breast cancer, I wouldn't have been able to spend a weekend helping others cope better with their diagnosis. I think it also helps me cope better with my life and my oh so healthy body.

Mental note to self

If you don't write in your blog, nobody reads it. I have a good excuse, I was volunteering at Casting for Recovery this weekend and was a tad busy. So I didnt blog.

I do recommend Casting for Recovery if you had breast cancer. And you get to go free. But hope it isn't pouring rain with an onshore (gale) breeze at the same time.

More updates tomorrow.

My doctor called me 'complicated'

I had a second visit with my primary care physician this week as part of my annual physical. My new doctor is very nice, very young, and she told me I am complicated. I actually appreciated that. She didn't tell me I was confusing, just complicated.

Why am I complicated? Because I have a whole bunch of confusing health issues that she can't find causes for. Why is my blood pressure high? We aren't sure. It has actually been testing lower recently and getting back to normal levels. However my pulse is running high. High thyroid levels can cause high pulse and high BP. A high BP can contribute to a high pulse but not the other way around. So if my BP is coming down why is my pulse staying high?

My thyroid levels are reading in the lower part of the normal range but they have tweaked my thyroid dose a little (one day a week I take half a pill instead of a whole one). If they lower my thyroid dose too much, then I can have all sorts of other issues. Now the plan is to come back in another month and see how my pulse and BP are doing.

I also have some mystery symptoms of cramping feet and lower legs - even with stretching regularly. Ever get two charley horses at once? That wakes you up in the middle of the night.

As a result of my echo cardiogram, I was told I have a fluttery valve that needs monitoring. Not a big deal but just something to watch. We also talked about my heart burn and how it is getting worse even though I am taking Prilosec daily so I get to have a endoscopy to make sure everything is okay. I was told I have a hiatal hernia a few years ago which is what causes the heart burn but since it is getting worse, they want a better look.

My left knee is responding nicely to the injection and is nearly pain free which has me focusing on the pain in my right knee - which is left from knee surgery and unrepaired partial ACL tear. I think there might be some arthritis in there as well - I was told that ice skating and skiing are very bad for knees. But that's a discussion for the knee doctor.

So my primary care called me complicated. She wants to see me again in another month. My co-workers agreed with me that I am as healthy as a horse on the way to the glue factory. I think I am supporting the local health industry. I think I would rather just be complicated.

Dieting and losing weight

I really am trying to lose weight. Cancer is fattening - that is mhttp://www.blogger.com/img/blank.gify official verdict. Its none of your business on how much I weigh or what I want to lose, we'll just say I feel fat and that's all that matters.

As a result I was interested in the list of best rated diets that just came out. I found it intriguing that they ones that are better are based on changing your eating habits and paying attention to what you eat and how much and not eating their fake food. I mean fake food regarding the diets where you need to eat processed things they send you or you buy in the store. I also noticed that the more extreme diets are also on the bottom. The diets were evaluated on weight loss, weight maintenance and heart health. So the list, from best to worst, is:

1. Dash Diet - this is the heart healthy diet that Dr. Evil a/k/a Dr Ego told me about so I am prejudiced against it. And its a government diet developed by the NIH to fight high blood pressure.
2. Mediterranean TLC - good for your heart but not necessarily good for your waist line. You need to watch your scale too.
3. TLC Diet - Therapeutic Lifestyle Changes diet developed by the NIH. Another government diet.
4. Weight Watchers - I like theirs. If you haven't tried Weight Watchers and want to lose weight, I recommend it. Everything has a point value. You get to eat whatever you want up to your point level each day. So if you want a frozen pina colada and three salads each day you can. Top rated for losing weight. And rated the best weight loss diet.
5. Mayo Clinic - Healthy eating buy only moderately effective for weight loss.
6. Volumetrics - Lots of meal prep and you eat lots of veggies, fruit and soup.
7. Jenny Craig - the expensive prepackaged meals sent to you so no restaurants and no home made food. I would go crazy if I couldn't cook.
8. Ornish Diet - from a book, heart healthy but hard to follow fat restrictions.
9. Vegetarian - Not for rapid weight loss but good for eating healthy and that is why it is so far down the list
10. Slim Fast - A meal in a can or a power bar doesn't have the appeal to me.
11. Nutrisystems - More packaged food. The "return of the TV dinner"? Yuck.
12. Vegan - This surprised me. I would have thought it would be higher because its all about eating healthy but it can be hard to follow and get enough nutrition.
13. South Beach - So you can lose weight but not be good for your heart at the same time.
14. Eco-Atkins - The improved 'heart attack' diet that is hard to follow
15. Zone Diet - Hard to follow and lots of food prep.
16. Gycemic Index - Not good for weight loss, heart and is hard to follow.
17. Medifast - Good for short term weight loss only.
18. Raw Food - Not well rated for nutrition, safety, and is difficult to follow. I would have thought it was higher.
19. Atkins - The original 'heart attack' diet.
20. Paleo Diet - This is the one where you eat like a caveman and are supposedly healthy but apparently not because its on the bottom of the list.

I try to follow the basic Weight Watchers model by skipping fatty food and watching portion control. I have several WW cook books and can make lots of yummy things from them. My problem is snacking. At least I know what my problem is. I am trying to be better. I have lost some weight since I joined the gym but not much. However I have gained muscles. I'll keep trying.

Its good for the hospital but is it good for the patients?

This morning I am horrified (is that too much?) that the hospital, Lahey Clinic, where I go for all my treatment might merge with another hospital, Beth Israel Deaconess, buried in downtown Boston (which I avoid like the plague these days). I like Lahey. Its a 10-15 minute drive at most. It is in the suburbs. It is convenient. I can find everything I need there. Don't change it! If I need something, like a test, procedure or other medical adventure, its all in the same place. They do have other offices around the area but they are all within the same 10-15 minutes except the one that is 5 minutes from one of my jobs. I don't have to get a road map to get to my appointments and deal with traffic, stress, and parking.

They are only in preliminary talks with BID and it could be some time in the future. "Hospitals across Massachusetts are merging or considering it, because of a growing trend toward giving providers an annual budget for each patient, adjusted for the patient’s specific medical condition, rather than separate fees for each appointment, test, and procedure. Doctors and hospitals that are part of larger coordinated networks and can oversee all of a patient’s medical needs are considered most likely to succeed under this system of global payments."

I appreciate that the hospitals want to survive but this is the part I don't like. "While ultimately successful, the Beth Israel Deaconess merger was deeply troubled for years." I don't want a hospital which is 'deeply troubled'. I want a hospital that takes good care of its patients, is nice to them, and has a decent cafeteria and everything is in the same place.

It is noted that "if they merge and bring on community hospitals, they would form “a really rich and formidable network’’ that would “provide a great deal of choice’’ for patients."

Well that's nice. But in the meantime all I ask is that you please pay attention to the patients and their abilities to accept change in their medical treatment. I do not want to be sent to downtown Boston for treatment or tests. I want everything to be conveniently located in the same building. Call me whiny if you want but I'm not changing.

To screen or not to screen

Well they finally figured out that they can't detect ovarian cancer in regular screenings. In fact the women who were screened had false positives and surgical complications as well as more deaths than the women who weren't screened. Oops. So I'll scratch that one off my list.

An annual mammogram, I can do that. A colonoscopy every ten years, I can do that. My husband who had that bad colonoscopy followed by surgery says he would rather have an annual colonoscopy than surgery again. I think prostate cancer screenings are up for debate these days. Annual skin checks I can cope with as well.

After one cancer diagnosis, never mind more than that, you get privileged to get every regular cancer screening there is. Because 'with your medical history, they need to be sure'.

Granted once you get on the cancer roller coaster, its too easy to over react to 'with your medical history we need to be sure' and start saying 'well I had cancer before, I need to make sure I don't have it again'.

But when talking with your doctor about a potential health issue that 'with your medical history they need to be sure', its a balancing act. I mean if they don't test and you have something, what if they catch it too late? Or do you need that extra trip on the cancer roller coaster as well as expense to get a negative test result?

But the point is that you should talk with your doctor. I like the times when my doctors tell me the normal protocol is this and there is no reason for anything more. I dislike the 'but with your medical history, we need to be sure' so here go some more tests and medical adventures.

The media plays a big part in the emotional roller coaster. If you listen to what the media tells you, you will be running from doctor to doctor, and eating red meat this week but not next week and upping your vitamin intake last week but switching to new supplements. Never mind that it seems that the media either reports on medical breakthroughs that are in the mouse-test stage or ones that aren't news because they have been around for a while.

There has never been a medical breakthrough that I learned about in the media that applied to me and was appropriate. My thought is to ask my doctor and skip the news reports.

How to prepare for surgery

Here's another article I could have written and I didn't go to medical school. Its on how to prepare for surgery. My questions to prepare for surgery are:

1. Will I have a scar that anyone can see? How long until it fades from my skin and my memory? That is important. Surgery isn't fun and you want to erase it from your brain as soon as possible. Also, don't mess it up so I have to keep thinking about it.

2. Will I get good drugs? Again this is key. No pain please! No infections! No side effects! I need to feel nothing at all. I had a hysterectomy and ended up with a urinary tract infection which required me to stay a day longer in the hospital and have to take antibiotics.

3. How long can I make everyone wait on me hand and foot? Really, how long till I will recover and don't lie to me? Part of this is how long until I am back to myself and when should I call you if I still feel like crap?

4. By the way will there be any long term side effects of the surgery? They don't tell you with breast cancer surgery that you can end up with shoulder problems for life and risk of lymphedema. Well maybe they did tell me about lymphedema but I didn't understand the significance of it. And about my shoulder...

Then comes the part of about fashion and accessorizing. If in patient, bring the right clothes for lying around a hospital bed. If you are stuck in a stupid johnny bring a bathrobe and slippers. If you are more mobile, how about a pair of shorts and t-shirt? And don't forget the toys - internet access, TV, cell phone, books, crafts, puzzles, etc. Nothing that requires huge amounts of brain cells because you won't have any for the first few days but something to relieve boredom or to put you back to sleep after they wake you up to check your vitals at 3am.

If you are an out patient, will there be any icky bandages and drains to deal with or just a little bandaid or a few (itchy) steri strips? I have dealt with a surgical drain and trust me, if you can avoid this in your lifetime, please do.

When you get to the hospital for surgery on the given day and experiencing any level of stress, be sure to tell everyone how stressed you are and often the anesthesiologist will show up early with good drugs. And at the very least you get more visits from the nurses to make sure you aren't freaking out on them. You also need to be sure whoever is retrieving you later or waiting around for you is in the right place to be told how you are doing and can come back and see you. Do not let them wander off with out a cell phone to the wrong waiting room...

I have learned to have a conversation with the anesthesiologist. I tell them that the anesthesia I have had for the past three surgeries worked well with no real issues as opposed to the anesthesia I had for one surgery that left me unconscious too long. And I don't want to see a needle. I don't want to feel a tube going into or coming out of my throat. And I have all kinds of drug allergies including Benadryl. After I tell them all this, I let them touch me. I'm not picky. I just have preferences and since surgery is all about me, I make sure they know them.

Finally, the most important question is can I have ice cream afterward?

I am not sure if I forgot anything but if I did, feel free to ask.

Another day = more confusion

As I wake up this morning (after 11.5 hours of sleep) I find three articles on the same topic - Aromasin, an existing drug for breast cancer treatment may help prevent it.

The first part of my confusion. Aromasin is in a class of drugs called aromatase inhibitors. I am on a different one called Femara. I was told they were all the same and I would start with Femara and if I had reactions to it or handled it badly, they would switch me to another. My confusion here is if they are the same, why isn't Femara and the other AI included in this article? Or if Aromasin is different than the other two, should I switch?

The second part of my confusion is that I thought I was taking it as part of the prevention plan against a recurrence in the first place. I did take Tamoxifen for two years and then am on Femara for three years total, two more years. Is this study only for people who are at risk but never had breast cancer in the first place? I am considered at risk because I had it once so should I take switch to Aromasin and stay on it for life?

I will need to discuss this with my oncologist when I see her in August. But that would require me to REMEMBER to tell her about this. Chemo brain prevents me from remembering more than the basics in life sometimes. Last week my husband says he likes being married to someone who is more of a space shot than he is.

I just believe its all a part of the evil conspiracy to confuse patients. Destroy their brain cells with chemo and then give them conflicting information they can't understand and will forget to ask their doctors about. I don't understand, I am confused.

Well, Whoop Di Doo

I found this article a couple of days ago about new targeted drugs for cancer treatment. My first thought well this is new and exciting and provides great promise for the future. Yes, its for smaller groups but as we know cancer is not one disease but hundreds of different diseases this actually makes sense.

But then my more cynical side shows up and says 'where is the damn cure?' Maybe I'm tired and not getting enough sleep. Maybe I'm cranky - ask my co-worker yesterday who I finally snapped at (he says he can piss off the pope so it was not a big deal) - maybe I'm stressed. Maybe it was the news that a good friend's husband's colon cancer has returned as well as the news that one of my husband's cousin's cancer has returned as well.

Also, this story about a dog who can detect cancer doesn't do anything for my mental state.

Life with cancer is a roller coaster. You get it, they treat it, you worry about it coming back because they haven't figured out a way to prevent that.

But I was optimistic for a few days. I am sure my optimism will return but not this week. So in the meantime my opinion of advances in cancer treatment that are anything short of a cure are 'whoop di doo'.

Confusion

I am confused. The Department of Agriculture has changed the food pyramid to a plate. I think they should stop changing it and work on explaining what they really mean we should eat. If you go look at the new 'plate', we are supposed to have protein, grains, vegetables, fruit and dairy. I don't eat that much in any one meal. My breakfast this morning will be egg beaters with spinach and some melon. Okay, so I am getting protein, vegetables, and fruit. The only dairy would be from the skim milk in my coffee or I could add some cheese. I don't have any grains... Should I add toast to my meal?

I don't know what I am eating for lunch today because we will get take out at work. It will probably be a salad with some protein on it. No fruit. No dairy unless it includes cheese. No grain unless it eat bread too.

Dinner tonight we are going out as well - more eating out than usual - and we are going to a seafood restaurant. I will have a salad first because I always do, then some kind of fish with vegetables on the side. Not sure about dairy, grains, or fruit.

The whole point of these recommendations is for Americans to eat right and not to eat too much. So why do I need to add to my meal to make sure I get everything I need? More food means more calories.

You will note there is no dessert section or chocolate section. Clearly they must be overlooked. But if you are confused just like me, be sure to look at the history of the dietary recommendations on the CNN article. Or if you want to see how the government clarifies this, go to the official plate website at choosemyplate.gov. I am sure they will do a governmental job of explaining...

Happy 4th Birthday to my blog

My blog is four years old today. This means my breast cancer diagnosis was four years and two days ago (it took me two days to figure out that I wanted a blog and how to get started). I was told breast cancer is a year out of your life. Well why am I still blogging? More importantly why are you people all still reading whoever you are?

And the year out of my life has stretched out into four years. Not due to cancer but due to the fact that my body has decided it is not ready to be healthy any time soon. It started with a little lump, two surgeries, and chemo and I had a new lump which meant another surgery. Then radiation which was followed by unrelated abdominal pain which turned out to be a hiatal hernia and gall stones which led to gall bladder surgery. Then my back started causing problems, I sprained my ankle, fell on my knee, blood pressure and pulse issues, and I am sure I missed a few other things in there but it will suffice to say that they have been dealt with in a couple hundred doctor appointments, medical adventures, tests, and physical therapy sessions. Needless to say I still have lots more of cancer cootie detection sessions in my future.

But I am still here and still writing and for some reason all of you are still reading.

On a more positive note, yesterday's medical adventure which was to be part one of three, turned out to be part one of one. Apparently the injections have to be put through to insurance as a three part series but once approved my insurance will cover it as a single injection. I said so you mean I wouldn't have to come back two more times? I was all for that.

The injection itself wasn't bad and the nurse was very good at distracting me. I was told it wouldn't hurt after - well that was WRONG. It wasn't pain, it was pressure inside my knee to the extent that I couldn't straighten or bend my leg fully and it was more painful than before. Apparently I also looked like I might pass out so they made me stay there with an ice pack for about 30 minutes until the color returned to my face. And they offered me juice, ginger ale, crackers, and water several times.

I eventually hobbled out to my car and drove home with an ice pack on my knee and ended up on the living room couch for the evening with my ice pack. Today its a little uncomfortable but not bad. I have no big plans for the day on purpose so I will take it easy and ice my knee some more.

Another medical adventure

I hate medical adventure. Today's medical adventure does not sound exciting at all. They are going to stick a needle under my knee cap - and its the first of three. One person told me it was awful. Another person told me the first one she had was awful and then she had the series done later by someone else who was very good and it didn't hurt at all. I am hoping for this.

I dislike needles to start with. I dislike medical adventures. I don't want to go to the hospital (again). I just had ten days with out a medical appointment - some kind of miracle. Today I have PT and then my medical adventure. Saturday I am having an Echocardiogram - another medical adventure. Monday I have PT, Tuesday I see my therapist, Wednesday I have PT, see my primary care for the rest of my annual physical (who knew a physical could take two visits to complete - perhaps I have health issues), and another needle in my knee. The following week I have PT on Monday and Wednesday, another doctor appointment about heart/blood pressure issues, and the last needle under the knee cap. That is 12 (yes, twelve) appointments between now and the 15th. Do I get a frequent patient discount? No.

I am being whiny. I am allowed to be whiny. What are the chances all these appointments won't result in more appointments? Zip. I already have more appointments after those but I don't even know when they are because the hospital appointment sheets only cover 10 appointments. I will suck it up and print out my list of medications and go off to my appointments. Maybe I can get caught up on my reading as I sit around in waiting rooms.