Its all fancy bookkeeping to me.

Partners Health Care, a group of doctors and hospitals, has promised to rein in costs by $40 million. That sounds like a nice number and everything should be peachy keen. But they are not giving back any money, they are renegotiating contracts and have taken over a year to do this. Also, their assets are $11.5 billion.

I have nothing against Partners and think they probably do a good job at providing health care. I also think that reducing health care costs is a good idea. I am just using them as an example here because they were in the news.

It is obvious that health care costs need to be reined in. I don't think this is really doing anything. Yes they are going to renegotiate contracts from high rates to low rates and take a $40 million dollar hit. But how does this help us consumers/patients? I don't see it. It looks like a lot of fancy bookkeeping to me.

Fancy bookkeeping is not going to solve the problem of high health care costs. (Or solve the debt ceiling problem but I refuse to get into that discussion about politicians who are too stuck on their own egos to compromise, negotiate and solve a problem.) Fancy bookkeeping can easily border on that gray area of the law which involves lawyers and prison cells.

While there are good intentions here to reduce health care costs, we need a bit more action than promises. We also need cooperation from everyone in the health care food chain - providers, drug and medical device manufacturers, and insurance companies, etc - to come up with some real plans and compromises and look at how they can restructure the way they do business so to offer better care at lower prices so all of us can remain healthy.

More on medical devices

I've written about this before. If you get a medical device implanted in you and it doesn't work, how do you give it back and get a new one? Hmmm... That's right up there with trying to uncook overcooked food.

Some geniuses (and I use the term loosely) commissioned a report to review the process by which medical devices are approved and regulated. They are now amazed to find out the process needs complete review because it does not look at safety and effectiveness of the devices.

How can a process approve and regulate something if they don't look at safety and effectiveness? And if they are so smart in the first place, why did they have to review the process in the first place? Let me guess, they thought they were perfect and couldn't be wrong and requested the review to prove they were right.

I think my point (and I always need a point) is that if the system is flawed and approving items which are not safe and/or effective, perhaps they should reconsider how they are doing it? If I have a medical device in me, I want to be very sure it is safe and effective. Perhaps the industry should not be about money but about the patients.

A newstory flitted on by

I was reading my email and 'listening' to the news on TV - multitasking early in the day again. A story flitted on by about how rates of ER negative breast cancer are down but rates of ER positive (like me) are up since 2003.

Now I can't find more on this story online. I will do more looking. The ER/PR negative breast cancers are a bit harder to treat because there are no hormonal therapies, like Tamoxifen, available. The ER/PR/Her2 negative (a/k/a triple negative) is a very aggressive kind of breast cancer.

It would be nice to find out more about this. I am sure there will be more some time soon, in a few months. Or the study will be refuted. But I am curious so I will look around.

Balancing

So you were told once you had _____ (fill in with any nasty ailment, top of the list is cancer). For the rest of your life you try to balance the fear that you could be told you have it again with the rationale that the odds are on your side. The diagnosis turned you into a pessimist - I'm gonna die mentality - instead of being a healthy optimist.

There is some theory that if you think you have something long enough you can actually give yourself the condition - I think that's a load of crap. But I do think that its all about learning to cope with your fears.

This woman writes about trying to cope - of course swollen lymph nodes, sore back, and cough mean her cancer came back everywhere. When she finally reluctantly gets to the doctor she is told she has the same virus that is going around.

Me, I'm a little different. I think I run to the doctor too quickly sometimes and over react. Of course its going to be something bad because I've already had something really bad (twice). Maybe I am a pessimistic hypochondriac?

But its a matter of balance. Yes we are all going to die some day but that doesn't mean every time you go to the doctor you are going to get bad news. My primary care decided that after seeing me monthly for three months that I am not going to die for the next three months so she can wait to see me until then. She did want to see me every month for three months because I am 'complicated' (her word) and have many issues that need to be dealt with.

This made me feel healthier just because she didn't want to see me in another month. But she doesn't think I am healthy enough to wait a year to see her again.

Every doctor visit becomes a 'what if they find something' visit. I need to channel my inner optimist to accompany me on my visit and leave my inner hypochondriac at home so to retain my sanity.

Doctors

Usually when you visit the doctor, the hospital personnel and medical staff all seem to be on the healthy side. There may be a few exceptions but hospitals seem to be full of doctors and nurses and other who have narrow waists, low BMI and you never catch a whiff of cigarette smoke near them. I can say that all my doctors are a healthy weight - except the pregnant ones.

So when they start talking about weight and healthy eating and exercise, I do give them credit that they must follow that life style as well - they must walk the walk as well as talk the talk.

I know about twenty years ago, I was treated by a nurse who had a pack of cigarettes in her pocket. I never see cigarettes around any more. The hospital now has a no smoking campus, so you see dwindling numbers of smokers hiding off the edges of the property enjoying their morning cigarette.

But what if you saw a doctor who was obese, reeked of cigarette smoke, and had the unhealthy pallor of a couch potato who's idea of exercise was another trip to the refrigerator? Shouldn't your doctor practice what they preach? Doesn't it give them a bit more credibility? What if your dermatologist was sporting a sunburn? I think if my doctor was an obese, chain smoker I wouldn't give any of their advice as much credit.

Now they tell me

Cancer made me fat. I am blaming it. While I was never a size 2 and in high school I was a tad hefty, I was a size 6 in college and for many years. But then between thyroid balancing issues and breast cancer treatment, I got fat. I am working on reducing the number on the scale but it is a slow process (which isn't fair, if you can gain weight quickly you should be able to lose it just as quickly).

Now they say the leading driver in getting breast cancer is being fat or obese. I am not obese. I have looked at the BMI charts, and I never got there.

But the conundrum is if cancer treatment made me fat, did my cancer increase my risk of another cancer or because of my weight? Or am I just doomed with two cancers behind me already?

If they had said to me when I was in treatment that I could prevent another cancer by not gaining weight, I would have been happy to live on lettuce for a while to combat those lovely drugs which encourage weight gain. Steroid bloat is a lovely side effect of chemo. And its very difficult to watch your weight when you are bloating up with drugs, focused on eating things that feel like they will stay in your stomach, and not getting enough exercise because you feel like crap.

Now they tell me a little too late. Crap.

Good news for patients

There occasionally actually is good news for patients. This time its financial. Many brand name drugs will have their patents expire in 2011 and 2012. In the Boston Globe today was an article "Drug Prices Will Fall Sharply As Patents Expire" (A poor title that I read first as 'patients expire'.)

The article mostly talks about Lipitor, Protonix, Plavix and other medications I don't take the but the point is there. All these expensive drugs that came out in the early 1990s or so, now will lose their patent protection and generics will take over.

I get my Femara by mail order - simply because I can't afford it at the local pharmacy. It cost me over $100 for a copy for a single month (OUCH!) so I switched to my insurance mail order and it cost me $70 for a three month supply. Then my last refill was $10 for a three month because it was for the generic. I found the retail price of Femara on line as: $386.28 - 30 day, $763.53 - 60 day, and $1,141.89 - 90 day. Basically that's more than $10 per pill... And if you get it in the retail packaging it has a nice little designer bottle to go with its designer beige/yellow colored pills. I prefer the white mail order prescription bottle myself filled with generic tablets.

My husband takes Concerta for his ADD and he recently switched to a generic as well. The cost savings haven't been as significant but I am happy to see any cost reduction.

The article does point out that: "When a drug loses patent protection, often only one generic version is on sale for the first six months, so the price falls a bit initially. Then, several other generic makers jump in, driving prices down dramatically. So in six months, maybe costs will be better.

It then adds: "The flood of generics will continue for the next decade or so, as about 120 brand-name prescription drugs lose market exclusivity, according to Medco Health Solutions Inc., a prescription benefit manager."

I would have thought the pharmaceutical manufacturers would be worried but I guess not.
"“A blockbuster drug that goes off patent will lose 90 percent of its revenue within 24 months. I’ve seen it happen in 12 months,’’ says Ben Weintraub, a research director at Wolters Kluwer Pharma Solutions.

Twenty drug approvals in the United States this year, and others in the next few years, will help replace the revenue."

I realize that most generics have the same effects for most people but are not equal. Sometimes a generic doesn't work as well for some people and they need to go back on the brand name. But still many people will see savings.

So we should enjoy our lowered costs while we can, before our doctors switch us to new medications that are 'better' and protected under patents.

So whats your medical history?

Do you even know your medical history? Could you write it down and give it to your doctor? I know the doctors always ask if you have had or if there is any family history of about twenty different things at one point or another when you first start seeing them. But then do they ever ask again? No.

But you should tell them about significant health issues periodically. It is recommended this is done every five years.

I am impatient. I tell my doctors more often. Every time I have aches and joint pain, I tell them how my mother has rheumatoid. Every time we talk about my bones and osteopenia, I tell them about the osteoporosis my mother, aunts, and grandmother had.

If there is no medical history of a diagnosis in your family, it doesn't mean you can't get it. But if there is a medical history of something, you may be more likely to get it.

Actually, I think anytime a family member member is diagnosed with anything more than the common cold, you should mention it to your doctor on your next visit. It adds to the big picture of how you are doing. If a family member is diagnosed with a significant something... like that little thing called cancer... it adds a huge amount of stress on you. So speak up and tell your doctor. Stress is a nasty thing that can cause you to grind your teeth, prevent sleeping, and cause depression and other issues.

In the meantime, go home, sit down and write your family medical history down. Then go back and update it as needed over the years. Give a copy to family members as well.

Modern advances for sick people

We know that medical advances have saved many lives. That is all well and good but the more important part is modern conveniences for us sick people so life is easier. If they can't cure us, we still should be able to live our lives comfortably.

Modern advances I couldn't live without:

- A VCR with a timer and now a DVR - I do not have to stay up late to watch my shows or worry about napping through them. (Or missing them because of a stupid doctor appointment.) They are always there waiting for me. Or I can even watch them online.

- Restaurant delivery services - why go out and sit in a chair that is not good for your bad back when they can bring you the food and you can eat it sitting on your couch with your feet up?

- Ice packs for pain relief. Especially in heat waves. These are wonderful. They are a little more difficult to deal with in January but we can always switch to heating pads.

- The internet. Its much easier to be sick at home when you can be connected to the outside world online and keep up with all your friends - and look up all your symptoms so you can develop a good case of Googlechondria.

- Mail order prescriptions - standing in line at the pharmacy is so passe. I am moving more and more prescriptions online to save money.

While I do appreciate medical advances and treatments, my life goes on when I am not at the doctor and I appreciate the comforts of home.

Life in general

Today I have nothing to blog about. I mean I found a few articles that interest me but I am not inspired to write about them. There is one about how MS drugs are priced too high and another about how Express Scrips is going to buy Medco and that will be a bad thing. And a third article about tall people being more likely to get cancer but they don't know why. But I am not interested. Maybe I'll have an apathetic day.

We are having a heat wave. Here in Boston, we are not equipped for heat waves. Its not like we are primitive, we do have air conditioning but our bodies deal with 0 degrees better than 100 degrees. When its 0, we can add layers indefinitely. When its 100, we don't like to walk around naked for fear of scaring the neighbors.

Today I am working from home and have to be very productive this morning. We have two window air conditioners - plenty usually for us. One is in our bedroom upstairs and one is in a downstairs room. My office is upstairs without an air conditioner. My desktop computer is in my office. It has the software and files I need to work on this morning. This might be an opportune time to move everything over to my laptop so I can work in front of the AC, but that would take too long. The cat likes the air conditioning. He has no desire to go outside today. But he wants to snuggle.

I am not having a good week. My back pain is having a good week. I am not scheduled to see my back pain doctor until Sept 13. I called yesterday and the only opening he has is Sept 2. I might call back today and take that - provided it fits in my schedule. I have to check my calendar.

Heat makes me crabby too. On the positive side, it might give me an excuse to play with the sprinkler later to water my plants. Actually my garden is having a good year. On Wednesday I had several cherry tomatoes and the larger ones are growing bigger and bigger. Peppers are coming in too.

So much for my apathetic ramblings today. That's about all I can deal with. Maybe I need an arctic vacation to recover from the heat.

Cancer chances

Someone told me recently that I was an inspiration to people with cancer because I have lived with it so long. I don't feel like an inspiration. Its just a life. Also, sometimes I feel like a cheat. My cancers were early stage - Stage I and Stage IIA. But the Stage I would have been Stage III if I was older... a weird staging system. Maybe I'm proof that cancer doesn't have to be a killer. There are many people out there with cancer and living a long time.

Betty Ford was one - she didn't die from her cancer. But in addition to famous people, normal people can get cancer and live. I have a friend who was diagnosed at Stage IV with breast cancer and now has been told, they can't find any signs of it. Can you undo stage IV? I have another friend who had Stage IV ovarian cancer, in 1980. She is now happily married.

But there are also the yucky stories. A co-worker's sister in law just died from stage IV lung cancer, three weeks after her diagnosis. My manicurist's dog (dogs get cancer too) died two weeks after a lung cancer diagnosis. A friend died in 2010, three years after her stage II diagnosis with breast cancer. Another friend's husband is fighting a recurrence of his stage IV colon cancer.

Another co-worker said to me the other day was that her theory on cancer is that once you get it, it may be 30 years but it will get you in the end.

I have to disagree with all this. Staging is tells you where you cancer is and how far along it is. But that doesn't mean it tells you what your chances are or how long you will live. Its something the doctors like to know.

Just because you get cancer, doesn't mean you are going to die from it, no matter how far along you are. I mean you could get hit by a bus tomorrow. If you are diagnosed with cancer, the doctors tell you this is your staging and then this is your prognosis. They do sometimes say 'its time to put your affairs in order' (and they have been known to be wrong about this too). But usually the numbers they say are things like 'the five year survival rate for your diagnosis is 39% or 20% or 95% or 8% or some other number between 1 and 100'. We all say 'okay I'm gonna die'.

But turn it upside down and think the other way - some people live and for a long time. This means they still don't know crap about cancer and are doing a lot of educated guessing. I am still (im)patiently waiting for a cure but I realize that I could just as easily die from something else as well. I have lived a long time with cancer and the side effects of its treatments but I still need to look both ways before I cross the street.

Part time vs. full time

If you are a patient, you are a patient 24 hours a day. Your doctor works 8, 10, 12 hours a day, more or less. This leaves you with no way to contact your doctor for 12-16 hours a day - never mind weekends. And now, heavens above, doctors want to work part time? What is the craziness? Maybe they are looking for work/life balance and a bit of sanity. Well, some people have a problem with this.

In general, more women and men are working part time while their children are young so they can be parents. So why shouldn't doctors? I don't see a problem with this - a doctor who is trying to be a professional and a parent who is allowed some flexibility in their schedule might actually be less stressed and more able to focus on the patient's needs.

My oncologist is just back from maternity leave. While she was out, I met with her nurse practitioner, who is now out on maternity leave herself. At my appointment, there was an issue and she consulted with my primary care immediately so there were no questions.

When I need to see my primary care for an issue that day, often she can't fit me in, but since she is in a group, I can see another doctor in the same group for prompt care. If there is an issue after hours, there is always an on-call physician so I can be a patient 24/7. (Personally I try to avoid on-call physicians because they often say 'you need to go to the ER' and I will not ever go to an ER again unless I am dripping blood and if I don't hear them say that I can safely ignore the instructions.)

Back in the days of the family doctor who made house calls and was available 24/7 for their patients, doctors were independent and you just had to wait until they were available or go elsewhere for care. (Did they ever get vacations?) Now modern medicine is developing a group practice so doctors can be human beings and see their families, be parents, and have lives outside the hospital.

I think a part time doctor is just fine. I just wish I could be a part time patient too and be healthy some of the time.

I survived

See this is a use of the word survive. Survive is not related to cancer. Cancer survivor is a label. I survived a bunch of doctor appointments and now I survived a rafting trip. But this was more fun.

The only injury sustained by me is a blister from my flip flops. On the other hand, my friends who went through the big rapids had a fair number of bumps and bruises. I was wrong about a few things.

- There is traffic for a NASCAR race more than six hours before the race starts so it is possible to get lost and drive around the back roads of New Hampshire and still mysteriously end up where you wanted to be.

- It wasn't a 3 1/2 hour drive, it was a five hour drive from my friends house.

- We did not float down the lower part of the river on tubes, we got on the raft after the worst of the rapids and it did make my back hurt. Actually I told the guide about my back and my lymphedema arm and he said I could sit in the back and not even paddle - which is what I did. But my back still hurt.

- It only took us 4 hours to drive back to my friends house and then I drove home.

- I wish I understood why it is possible to drive when one is exhausted and trying to stay awake and then instantly be wide awake when one arrives at home at 1015pm and can't sleep. I stayed up to late. I did not sleep well. I will be VERY tired today but will go to bed early so I will be perky for my doctor appointment tomorrow.

One note was that my friend who was the planner and birthday girl - currently officially 49 5/12 - knows my medical history. To everyone else, I just said I have lots of medical issues and didn't mention cancer at any time. A friend from college who I haven't seen in years talked about friends of hers with cancer. I could easily have brought it up but I wanted a cancer free zone and blamed all my issues on my back.

But overall it was a fun weekend. It included eating yummy fattening food without any regard for the fat content, sitting around the camp fire listening to the river (and the logging trucks screaming by), swatting a few million mosquitoes, deer flies, and other insects while they chomped on us, and no access to technology. Yes I was off line for 36 hours and survived that as well (see another use of the word not related to cancer).

Now it is back to reality, work, doctor appointments, and life in general. But I think my husband and the cat missed me.

Fun does not equal stupidity

I am not stupid.
I am not stupid.
I am not stupid.
I am not stupid.
I am not stupid.
I am not stupid.

I'll keep saying this. Why would anyone think I am stupid? Well perchance a few (like my doctors if I asked them but I am not going to) if I told them I was going white water rafting. Actually I am not rafting I am going floating which is very different.

A friend of mine is having a significant (defined as ending in a 0) birthday next February and she wants to go white water rafting. But as she lives in New Hampshire, it is impossible in February. It would be more like sledding or ice skating or some weird morphed sport in between. So we are celebrating early, like now when there is water not ice in the river.

Shortly I am leaving to drive 1 3/4 hours north to her house. We will then pile six of us into her husband's truck and drive another 3 1/2 hours north into the woods of Maine where we will sleep in bunk houses, build a bonfire, and make every effort to embarrass the teenagers who are accompanying us. This trip is made up of her female friends and some of their teenage daughters - I am sure we can properly mortify them.

Tomorrow morning we will get up and all the rest of them, except one who injured her back, will go white water rafting. The injured friend and I will float down a gentle portion of the river on tubes and not further damage our bodies. Then we will pile back in the truck and drive 3.5 hours south and then another 1 3/4 hours south.

So I am not stupid. Really. I will not carry anything heavy. I will not do anything that causes any pain. I will bring all my drugs with me. I will not be stupid. But I will have fun. (And I made a bunch of brownies to feed the bears that might come by so they won't bother us.)

A note to potential burglars: our house will be protected by the cat in my absence who is backed up by my ex-military husband so don't even think about it. The cat will do everything possible to protect his supply of cat treats and canned food.

Am I supposed to blogging about cancer?

I have been thinking (always a dangerous proposition) recently. I have a blog, as you might have noticed since you are reading it, and its called Caroline's Breast Cancer Blog. But I don't write much about breast cancer much these days. Why? Well because it doesn't consume my daily life the way it used to. But it is always there.

My life has been changed twice by cancer. The first time in 1981 with my first diagnosis of thyroid cancer. It was a good cancer, a curable one, a treatable one, but it was still a roller coaster ride. I was told by my doctors that I should be fine but to be healthy, blah, blah, blah. And oh, yeah, you are now on a prescription for life to replace your thyroid hormones. This was back in the 1980's where it seemed the fad was to ask people 'if you were stranded on a desert island with only one thing, what would it be?'. My answer would always be a lifetime supply of thyroid medicine. Everyone else wanted to bring War and Peace or their spouse. Me, just my pills so I could stay alive.

And that lead to a life of 'with your medical history we need to be sure' every time I went to the doctor. Once you get on the cancer bus you never get off. Over time, it faded more into the background of my life but it never went away when I went to the doctor.

Then in 2007, a breast cancer diagnosis consumed my life and I started this blog. Cancer became the forefront issue in my life and led to many doctor appointments and all sorts of medical (mis)adventures. This time cancer treatment included chemotherapy and radiation which left some lasting physical imprints on my body. Add in gall bladder surgery, a lymphedema arm, a few injuries - ankle, knee, and tennis elbow, and all I do is go to the doctor.

But four years out, my doctor appointments are less about cancer and more about other issues. My cancer doctors are: my endocrinologist twice a year, my medical oncologist three times a year, my radiation oncologist once a year, and my surgeon once a year. I will be followed by my endocrinologist and surgeon annually for life eventually.

But I seem to see my other doctors about non cancer things more often. I am seeing my knee doctor in three months for follow up on my other knee. I see my back pain doctor every three or four months for life or until a miracle occurs and my back hurts less - it will never stop hurting. I am seeing my primary care for follow up on some medical mysteries in three months. My therapist I see regularly to deal with my continued medical spiral. But my cancer care is fading more into the background.

So am I lying because I don't write about breast cancer as much? Should I change my blog to be Caroline's Continued Medical Disaster blog? Have I finally reached that life after cancer, a/k/a the new normal that I was always told about? Am I proving there is life after cancer? Would I have as many health issues if I didn't have cancer? My back would probably still hurt. I would still be a klutz and fall on the ice and hurt my knee. Would I still have my other medical mysteries? I have no idea

But I don't write about my breast cancer as much as it is fading in the background of my life. It will never go away. It will always be there as will my thyroid cancer. Life after cancer, a/k/a the new normal, is never the same as it was before. Every time I go to the doctor, it will always be 'with your medical history we need to be sure'. I will read about the cancer headlines and comment on them here. And I will still blog, and hopefully it will continue to be less about cancer.

Life with pain... without the drugs

I take five prescriptions daily. One for thyroid, one for post breast cancer, one for back pain, one for inflammation related to back pain, and one for my sanity. I have other prescriptions in cases of extreme pain or loss of sanity. I still get a lot of pain.

Sometimes I wonder what if I stopped taking them all - well not the thyroid one or the breast cancer one or the sanity one... But the back pain and inflammation ones. I mean what if my pill supplies ran out and they didn't make them any more, where would I be? I would prefer not to go to the doctor or to take any medications. Before all this, I was an advil every few months kind of person.

I was interested to read this article about living with pain without drugs.

The article recomends five things instead of medicaitons:

1. Exercise - but I already exercise. I make it a point to keep moving.

2. Alternative therapies - like acupuncture.. I already do that too.

3. Sleep - one of my favorite past times. Believe me I make a point of getting my beauty rest (I need it!).

4. Supplements - I already take them - fish oil, vitamin B, etc

5. Heat and ice - ice is a wonderful thing after the gym. Heat is a wonderful thing for those other pains.

Okay, I need more suggestions. I already do these. So I guess I have to stick to the drugs for now.

Living with cancer

I follow a few (billion) cancer sites. The most helpful ones send me emails telling me what is going on as opposed to the ones I am supposed to remember to go and read (excuse me but chemo brain does not allow that kind of thought process regularly - and no, I see no reason to give up the chemo brain excuse anytime in the next decade or so). This morning I received an email where someone asked: "Can you give tips to becoming a successful survivor?"

At first it seems a tad naive. But then I started to think (a scary prospect) and came up with some input.

First of all, skip the survivor business. To me it is a label and has some negative overtones that imply illness and eventual death. You want to be a person who coincidentally has a cancer diagnosis behind them and is now living with cancer (because, no it doesn't go away).

Second, there is no magic panacea, one size fits all solution here. You need to find out what works for you. The best advice I can give is get off your butt and start trying to figure this out. Do you want to write a book or a blog about this? Do you want a support group or would you prefer a therapist, or both? Everybody has a different combination of support that they need to cope with being in treatment. The option of not needing support I think is non-existent. We all need some kind of support at this time. Is someone going to chemo with you or do you want more than that? You have made the first step in this process by simply asking.

Then, now that you have been given a wake up call on your own mortality, what have you always wanted to do but never did, never found the time? It is now the time to do it. Do you want to save the world or merely hike the Grand Canyon? Do you want to give back and help others - read to the blind, bring snacks to chemo patients, or walk around the world for cancer awareness? Give some thought to what you want to do and try some different things.

Eventually you will find that there is life after cancer. You aren't surviving. You are living.

This morning I am in avoidance mode

I am in avoidance mode this morning. I am scheduled to have an endoscopy this morning. An endoscopy is not a big test. They put you to sleep and stick a camera down your throat to look for bad things - mostly to tell you how bad your heart burn really is.

I was very concerned about the idea of a camera down my throat because I googled it and read all the descriptions of what they do. Then I asked my husband how it was when he had one - and he said it was no big deal. I also asked the nurse who called to ask me all the questions and she said they put you to sleep and you wake up and its over. So that is now okay.

But with my medical history, they have to be sure. Which always scares the crap out of me - because of my medical history and needing to being sure. How many bad things are found in routine tests? Have that happen a couple of times and then see how calm you are. And my doctor called last night to confirm why I am having the test she ordered... Does she need a reminder?

So here is my day so far. I couldn't sleep very well and the cat wanted to get up at 5 so I did. He didn't want food or to snuggle, he wanted, the indoor cat, to go out. Now I am wasting time on line. I did slightly redesign my blog. The cat is now napping by my feet. I would like some breakfast and am extremely thirsty - but only because I can't eat or drink for six hours prior. I did cheat and have more than a tiny sip of water with my morning prescriptions and just had a second not so tiny sip of water with my second round of morning prescriptions.

Sooner or later I'll stop dawdling and take a shower and brush my teeth. I find humor in the fact that when they talk about prep for these procedures, they always stress brushing your teeth. I hope at the end of the test they tell me they found nothing too interesting and I get to take it easy this afternoon because I was sedated and am not allowed to make important decisions for 24 hours. Maybe my husband will decide whats for dinner. Tomorrow morning I go back to my doctor and we get to talk about all the uninteresting things they found. I have an hour before I have to leave but I'm not ready to take a shower yet so its time to turn on the TV.

A movie I am dying to see.

As I said yesterday and many times before, I only blog about what I want. I am picky. Also, my thoughts have changed over the years since my most recent cancer diagnosis in 2007. At first I wouldnt read books or see movies that had the word cancer in them. It was too painful to watch. I kept on finding cancer mixed up in all my normal books - why did someone have to get breast cancer and die and ruin a perfectly good trashy romance novel? Or what is chemotherapy doing on that TV show? I was looking for cancer free zones to enjoy snippets of a reality that had no cancer.

Slowly I got better about this. I watched 'The Bucket List' and while I still have not put together my list, I have put some thought in to it. And if you are wondering, they did a pretty darn good job of portraying chemo and its effects. Then I read a few books that included heroines coping with cancer and their strong, handsome romeos caring for them through their nausea and midnight trips to the ER.

I got a request at the end of last week to write a post about an upcoming documentary that I am now dying to see. Steve was a stand up comedian who's dream was to appear on Letterman. He kept trying and kept getting declined but continued to persevere. Then he got cancer. One of those lovely kinds - where there is no treatment and no cure. Those are the really fun kinds of cancer. They take a lot of pictures of your insides regularly and tell you how much they have grown/shrunk and you don't have to worry about lifetime exposure to radiation from CT Scans. Steve's friends made a documentary of his dream 'Dying to Do Letterman'.

Dying to do Letterman: Kickstarter for an Oscar® and Beyond from Joke and Biagio on Vimeo.

They have won a few awards and are now able to see if they can get into the Academy Awards. And I need to go see it. I want to know how someone with cancer manages to hold on to their dreams and keep pursuing their goals. I want to see the humorous side of cancer diagnosis. I want them to get an Oscar for showing humor in life with cancer. And I want to see how Steve attains his dream - well I assume he does. I don't know. I haven't seen the movie yet and I'm dying to know.

I do know that they have raised the $37,000 they needed and that Steve was diagnosed in 2005 and he is still around now (which shows doctors don't always have such a good grasp on math).

Now I want them to have a showing around here - and I know the perfect theater and can help send a bunch of us cancer people their way. What ever you do, don't tell me the ending! I can put it on my bucket list.

The Ups and Downs of Blogging

If you have a blog you will understand what I am talking about. There are lots of ups and downs of blogging. When I first started blogging I was concerned about my privacy and what if people knew who I really was? OMG, I am not going on stage in any sense of the word.

But blogging has been a great way to cope with my medical madness (say that three times fast - and then try to live it). I write about my thoughts, pains, hopes, dreams, medical (mis)adventures, and more. I also have 'met' hundreds or even thousands of people around the world who blog or otherwise have an online presence. They have become my friends. We support each other. We read each other's blogs and leave comments and thoughts. We live through each other's medical ups and downs. If someone doesn't post in their normal time frame, we wonder if they are okay.

People who we don't know and aren't going through medical stuff find our blogs and leave us messages. Sometimes they leave us spam in broken English, claiming to have the cure for cancer, or could I send them $10,000 so they could get their money from the estate of their Nigerian relative and will then share it with me. I also get links to purchase Viagra and other drugs online, as well as links to other shall we say 'interesting' websites. (Blogger has an antispam filter on its comments so those never get posted.) And I can always delete any comment I find offensive - its my blog so I have the power.

Sometimes I write about non medical things or things that are slightly medical related - like Broccoli last week or Betty Ford over the weekend. But usually I write about what has ticked me off, interested me, confused me (not hard to do), or my avoidance of my latest medical (mis)adventure. The only requirement that a blog topic must meet is that it interests me.

I also get people requesting to put feeds of my blog in different places. You can find my excerpts of my blog on Opposing Views in the Health Conditions section (Cancer subsection) and you can find it on Before Its News. Sometimes I even get it to import to my Facebook Notes but that doesn't always work thanks to advances in technology that broke that system last spring. I think it pops up in other places as well.

I even get people who want to write a guest post for me - um, no, this is my blog and I write it all. If there is a day when I don't write it, that would be a 'bad' thing. I would be medically incapacitated and my husband would be writing things for me which would only be bad news. So we will pretend that day will never come. This is often how cancer blogs end, the spouse or family member posts funeral arrangements or links to online obituaries.

I get people requesting me to write about a specific topic - I only do this if I am truly interested which I rarely am. I am not going to write about a cure for cancer that the pharmaceutical industry is trying to keep off the market so they can continue to make money. I am not going to write about a medical center far away. These have no interest to me and do not impact my medical roller coaster.

However, recently I was contacted and requested to blog about an upcoming documentary. I did give it some thought and will write about it. But not until tomorrow. You have to come back and find out what intrigued me enough to write about.

Toxins

Toxins are everywhere. We need to stop breathing, eating, drinking, sleeping indoors, sleeping outdoors, exercising, sitting, standing, or walking to protect ourselves. They are evil. They will kill off the human race.

Therefore I am glad to see that the NIH is going to ban a bunch of toxins. Actually they want to be able to ban up to ten toxins each year. But which ones?? They don't tell us which ones they want to ban. They want to ban some. How specific.

Now PCBs have already been banned because they are carcinogens. But the elementary school I attended for six years has been found to contain high levels of PCBs and will be rebuilt. Is there a correlation between going to school in a building with PCBs and getting cancer twice? I have no idea. But my point is (and I always need a point) is that just because something is banned doesn't mean it still won't be found and have to be dealt with (in some VERY expensive way).

DDT was banned and now we have Bald Eagles again so there is a track record of success.

But going back to the NIH, we need a little detail here. They want the arbitrary ability to be able to ban up to ten substances a year. While I am all for banning bad things, I think they need to have to reach a level of credibility to be able to ban them. They can't just say 'we think it might be bad' they need to be able to say 'we know it is bad and this is why'. Otherwise, it might just be a little too much power and we'll all end up living in caves again.

Thank you Betty

Yesterday Betty Ford died. She was 93 which is a ripe old age if you ask me. In 1974 she talked about breast cancer, her diagnosis and mastectomy. That was 37 years ago if you do the math.

She was the first to bring breast cancer out in public. Before she did, no one talked about it. She deserves a lot of thanks for this. She let her story be told publicly in an article in Time. The results of her going public and tell her story became evident fairly quickly. Two weeks after she talked to Time magazine, Happy Rockefeller, wife of Vice President Nelson Rockefeller, did a self examination and discovered lumps and was diagnosed with breast cancer herself. She credited Betty Ford with encouraging her to do a self examination.

She did not die from breast cancer even though she was diagnosed with it.

Googlechondria and difficult doctors

If you have a new symptom, what should you do? Google it! Self diagnose yourself with mad cow, colon cancer, typhoid, or any other ailment. Then call your doctor, read your print out and tell them why you think you have it.

Are you a hypochondriac? No, you aren't. You have Googlechondria. You google everything and find out you what is really wrong with you. Why do you need a doctor other than to prescribe the appropriate medication to cure you instantly? All you need to do is call them and they will call in a prescription. It is best to call daily to build good relationships with their office staff as well. They will learn to recognize the sound of your voice and get the doctor promptly as you deserve the attention.

If you do this, you are not alone if you read this article. What you really are is giving your doctor a headache. There was an educational video on QuantiaMD which was a doctor to doctor forum on how to deal with difficult patients called 'The Patient Who Knew Too Much'. I tried watching the video and could only get through the beginning and then couldn't log in to watch the rest. Maybe you have to be an MD or something but what I saw was offensive enough.

Yes I realize doctors are dealing with truly sick people as well as the hypochondriacs - which is also a legitimate ailment that may need psychiatric as opposed to medical care - however they should not be stereotyping and labeling us. As a professional patient I could write for hours about difficult doctors - don't get me going about Dr. B again (the egomaniac who diagnosed me with high blood pressure because I couldn't have any secondary causes as it would be too unusual).

I am not a hypochondriac (famous last words). I have learned not to Google things to self diagnose because either they freak me out and I am probably completely wrong. However I see nothing with going online and looking up information on ailments/tests/procedures/medical adventures which I have been told I have. I also see nothing wrong with going into my doctor at my next scheduled appointment and ask about a new treatment for something I have.

I do agree that doctors probably are required to keep up on the latest medical information and protocols, as well as help in coping with difficult patients. Not everyone is nice. They see patients at their worst - a fever or bad diagnosis can turn a normally nice, level headed, sane person into a hysterical, stressed out puddle of tears.

An appointment should be a learning experience on both sides - the patient should learn how to take care of themselves and the doctor should learn about what the patient is really concerned. But as we know the road to hell is paved with good intentions, this doesn't always work. The Googlechondria patient meets the doctor who doesn't listen. The doctor labels the patient as difficult, the patient hates their doctor. A stand off ensues. Both need to check their egos at the door and listen to each other.

My advice to both is patients stop Googling and doctors start listening.

Stem cells

Yesterday I had a doctor's appointment (a novel event) and had to wait a few minutes to see the doctor so I grabbed a copy of A Woman's Health magazine (since I left my book on the check in desk and didn't realize it for a while).

I found the magazine relatively interesting and a couple article caught my eye - especially one on the uses of stem cells. I didn't realize you could use stem cells for much else than a few kinds of cancer but evidently you can. This is interesting. Maybe they will be able to cure all kinds of ailments with stem cells in the future. And they don't have to use the controversial embryonic cells, they can get them from adults.

Just a little interesting advance on something that has been known for a while.

That's all I have to say today. Other than the doctor was the surgeon who had sent me to PT and for injections on my left knee this spring. I told him my right knee, that he operated on 10 years ago has not been feeling that great. He wants to see me in three months to see how it is and maybe we'll talk x-rays, injections, etc then. Oh, joy.

But I don't really like broccoli

The one thing I have in common with the former President George H.W. Bush is that I am not a huge broccoli fan. I eat it, sometimes. But not all the time.

My parents have an on-going issue with broccoli. My father is convinced it is good for him and he should eat it regularly - a couple times a week is fine with him. If he goes to a grocery store, he will come home with broccoli. If he goes to a restaurant which has a dish with broccoli in it, he will order it. My mother, on the other hand, would prefer to eat it less frequently - once a week at most.

Bad news for my mother. The latest research shows that broccoli and other cruciferous vegetables contain Sulforaphane, one of the primary phytochemicals, which has been shown for the first time to selectively target and kill cancer cells while leaving normal prostate cells healthy and unaffected. If my father learns this, I am afraid he will want it daily. That would be pretty darn boring as far as I am concerned.

Additionally, "The findings, made by scientists in the Linus Pauling Institute at Oregon State University, are another important step forward for the potential use of sulforaphone in cancer prevention and treatment. Clinical prevention trials are already under way for its use in these areas, particularly prostate and breast cancer. "

Luckily there are lots of other cruciferous vegetables out there to eat besides broccoli. A partial list from wikipedia includes: horseradish, collard greens, Chinese Broccoli, cabbage, brussel sprouts, broccoflower, cauliflower, kohlrabi, bok choy, komatsuna, mizuna, broccoli rabe, flowering cabbage, chinese cabbage, napa cabbage, turnip (roots and greens), rutabaga, Siberian Kale, mustard cabbage, arugula, water cress, radish, daikon and wasabi. We have been eating komatsuna and mizuna recently as I can get them from our local farmer's market. We use horseradish as a condiment regularly and cauliflower, kohlrabi, bok choy, kale, radishes, arugula and others cross our table fairly frequently. So I will skip the broccoli and stock up at the farmer's market for the summer.

I have a few ways of cooking all these greens that I like. I usually start with some sesame oil and toss in some chili paste for some zing. My brother in law likes to put vinegar on his which is also pretty good. And since everything is better with butter, that's always another option.

I am a fan of eating right but sometimes I think that if I ate the 'right things' all the time, all I would eat would be the 'right things' and not be able to fit in the other foods that I really like to eat without completely going off my diet. But I can fit in more green vegetables through the summer when they are fresh and tasty. But I'll skip the broccoli when I can.

Yes, my mother reads my blog so I am sure I will hear about this.

Its all about attitude

I think your attitude going into something greatly affects the outcome, particularly your enjoyment. Its no different with cancer. When I was diagnosed with breast cancer, I was very upset/depressed/stressed for some time. Then I decided since I was lucky enough to have cancer twice, I need to make the best of it.

I have many cancer friends, some in person, some on line, and they range from stage 0 to late stage IV with the end in sight, and are anywhere between just diagnosed to 25 years out (I never seem to meet anyone who is 30 years out from a diagnosis like me but maybe I was precocious or something.) Their attitudes range from 'I don't even think about it' to 'I'm doomed'.

I think I went through a phase of partial 'I'm doomed' for a bit but then got past it with the help of support groups and therapy. Now I think if I got lucky a third time (and its third time is a charm, not three strikes you're out), I might experience a short term of 'I'm doomed' but would not let myself dwell on it.

Cancer doesn't deserve to suck all the life out of me. Cancer people can have fun and, in fact, deserve to have more fun than just about anyone else. Cancer isn't worthy of anything but disdain. Its not worth hating and its not worth dreading because it is not worthy of any wasted effort on your part.

I have to say I am lucky enough to have cancer because I can't think of it any other way. I can't let it take over my life. I can't let it suck me down into a cloud of despair. I have to go through life looking for four leaf clovers, lucky pennies, and the pot of gold at the end of the rainbow. Maybe cancer made me an optimist.

More medical/cancer news

I seem to be in a summary mode but there are three more articles of note this morning.Some I understand and some I don't. Well maybe I sort of understand these but not completely. Is it chemo brain? Are they complicated? Or am I not as smart as the average bear?

- The government is mandating doctors and hospitals convert to digital records in five years. But the incentives don't kick in until next year and the deadline is 2015. (In my math, this is 2011 and 5+2011=2016 but we have always known the government has its own math system.) I do like this idea that medical records will go digital. I find it absolutely ridiculous that patients are forced to carry big files of confidential paperwork from appointment to appointment. I remember in the past if I was going from one appointment to another in the same hospital, sometimes I had to carry my own file with me (and got to read parts of it - one time I went to the cafeteria and sat down for some heavy reading/deciphering of doctor scribbles.) But if it you have to take them from one office to another in separate facilities, how do doctors refer to your files when you call in with questions if you file is elsewhere? If its in the computer they can look it up easily and see all your issues in one place.

- There are new horizons in place in determining how cancer spreads. (Warning, science lesson in this article.) Basically (what I think I have figured out from this) is that it is now known that cancer cells hijack the development of cells and takes them back to stem cells and turns them into other thingies and it all gets really confusing... But this is considered a major breakthrough in that cancer researchers now have another direction to go in, I think. This is complicated and requires lots of thought to decipher but it sounds very promising.

- There is another attempt to explain cancer risk reduction. I am very confused on this risk reduction business. I mean I understand that if you don't smoke you reduce your risk of lung cancer, etc. But I don't understand what they mean by a 1.6% or 2.4% risk reduction. What exactly does that mean? If you have a 10% lifetime risk (I am making this up) of getting breast cancer, does a 1.6% risk reduction mean you can reduce your risk to 8.4% (10-1.6=8.4) or to 9.84%. (10%x1.6%=.16% and 10%-.16%=9.84%) I don't get it. This article tries to explain it here: "For instance, in a general population of 1 million women, even a 1.6% absolute risk reduction amounts to 16,000 fewer cases of cancer. In contrast, a 3.2% reduction in a higher-risk group – postmenopausal women with a family history – amounts to only 2,560 fewer cases, according to the model." The first sentence gives me a clue but the second sentences confuses me. Brain overload. I think I need to ask my doctor to explain this as she would to a five year old.

Maybe I can just say that cancer is confusing to all of us.

Yesterday I was on to something

Yesterday morning I wrote about learning how many other cancer survivors are out there with second and third cancers. Then after going to the grocery store and gardening I needed to rest my back, I decided to read my latest issue of Cure Magazine. (A note about Cure, if you have/had cancer and don't read it you should. It explains new advances and information about cancer in easily understood language that doesn't talk down to you and covers real issues.)

Its latest issue covers three topics which are near and dear to my heart.

- Use of radioactive iodine in treating thyroid cancer particularly when treating those under 18. I was 19 so I think I can be included in this article considering my medical history. The article states: "Radioactive iodine should generally be prescribed for those at very high risk for recurrence or known to have microscopic residual disease and those with iodine-avid distant metastases,” the researchers wrote in The Journal of the National Comprehensive Cancer Network. However, “RAI should be considered in other patients only after carefully weighing the relative risks and benefits and the aggressiveness of the clinical presentation, because RAI may be associated with an increased risk for second malignancies and an increase in overall morbidity and mortality.”" Yoo hoo!! Are you talking about me?

- Thoughts on avoiding over treatment in cancer treatment - There is such a thing as too much of a good thing. "...a growing number of people—from patients and caregivers to doctors and researchers—concerned about the balance between the risks posed by cancer itself and the risks of treatment. Several recent studies have documented “overdiagnosis” or “overtreatment” of people with certain types of early, slow-growing or low-risk cancers or even precancerous lesions—many of them picked up with increasingly sensitive tests.". I think they are hinting at a theme here...

- Another article referring to over treatment and node removal in breast cancer treatment. "Now researchers have found that a select group of early-stage breast cancer patients may not need ALND (Axillary Lymph Node Dissection) even if one or two sentinel nodes contain tumor cells. Skipping ALND eliminates common side effects of the procedure, including painful and chronic swelling of the arm, known as lymphedema, and infection. Yet again, less is best." I hate this. I am in this category so maybe I was over treated and now have lymphedema and shoulder issues as a result. But I will stop thinking that because there is no sense in regretting the past.

To summarize, I had thyroid cancer and was treated with Radioactive Iodine which is now shown to cause other cancers when used on young patients. I had breast cancer and had on small metastasis in one lymph node and had the surgery that has caused more problems. I have to just think that I was treated according to the standards at the time and it can't be undone. Isn't the cancer roller coaster fun when these fun little emotional side trips are added in?

Its nice to know I am not alone

Back in the dark ages of the late 1970's through the early 1980's, there were approximately 10,000 cases of thyroid cancer annually in the US. More cases are in women than men and it did occur in teenagers as well as older adults. It included me in 1981. Its an isolating disease. I felt alone.

Then in 1984 I had a benign breast tumor. Then in May 2007 I had breast cancer. Then in December 2007, I had another benign breast tumor. Now it turns out, there are lots of people out there like me.

Finally there has been a study about people like me - 'Childhood Cancer Survivors At High Risk for Multiple Tumors as They Age'.

The Childhood Cancer Survivor study "was launched in 1994 to identify the challenges facing childhood cancer survivors and to develop new methods to ease or prevent late effects." Raising hand, 'yoo hoo - me too, me too!!!'. The study found that "1,382, or 9.6 percent, of survivors developed new tumors unrelated to their original cancers. About 30 percent of those survivors, 386 individuals, developed third tumors. Four or more tumors were found in 153 survivors in this study."

First they defined childhood cancers as age 20 and under. I was 19. They followed over 14,000 people who had had a childhood cancer, 70 percent had received radiation which has shown to increase the risk of later cancers. I did not have radiation but I did receive radioactive iodine. The study states "Female survivors whose childhood cancer treatment included radiation were among those at highest risk for later tumors, particularly breast tumors."

Additionally, "Risks were also associated with benign tumors. Investigators showed survivors whose second tumor was a non-melanoma skin cancer had a 1 in 5 chance of being diagnosed with another, more aggressive cancer within 15 years. The group included 485 survivors with either basal or squamous cell skin cancers. "These survivors are candidates for additional genetic evaluation to look for an underlying genetic propensity for tumor development or an inability to protect healthy cells against the harmful effects of radiation," Armstrong said."

Even though this focuses on skin cancers I find it interesting they want to have further studies on the high propensity for tumor growth.

I am not a medical person at all - just a patient (and because of my medical (mis)adventures, I can ace all the medical related Jeopardy categories). But I do find some comfort in the fact that there are more of us around. We need to have annual conferences with big parties to talk about life with cancer. Research oncologists could listen to us and learn more.

I am getting ahead of myself here but my point (and I need to have a point) is that more research is needed for this growing population on the results of the long term effects of cancer treatments, radiation in particular. What doesn't kill us, makes us stronger... but it may be our undoing in the end.

Waiting for doctors (and others)

Yesterday I stumbled across this article which says doctors should pay you for wasted time waiting for them in waiting or exam rooms. I thought it had some basis because I despise tardiness (as anyone who knows me will say). Why shouldn't I be compensated if I have to sit around for hours and wait?

Then I started reading the comments which made me see the other side. Doctors are often late for a variety of legitimate reasons - many of which are beyond their control:

- A true medical emergency - should they walk away from a patient dripping blood or having a heart attack to stay on schedule? I think not.

- They are forced by their employer to schedule patients so close together that they do not have a chance of giving patients any attention before they need to rush off to their next patient.

- Patients have complicated or additional issues which require more than the scheduled amount of time. What should the doctor say? 'You have cancer but why don't you schedule another appointment and we can talk about it next time?' Sometimes they need to spend a few extra minutes with their patients.

- Patients run late. Yep, patients are not perfect so sometimes we get stuck in traffic etc.

- They have to take time from their schedule to speak with patients who call in with unexpected issues.

There are problem more issues that I can't think of right now but I am only on my first cup of coffee.

I do not agree with the article in its entirety of suggested ways to deal with waiting:

1. Send your doctor a bill - um no. And don't expect a gift if they run late.

2. Find an on-time doctor - Well, 'duh, yes'. If your doctor is chronically late, find one who isn't so over scheduled or poorly scheduled or a poor time manager that they are always late.

3. Schedule smartly - I usually try for early in the day as my theory is they don't have a chance to get behind schedule.

4. Mention the doctors in this article to your own doctor - why? What's so great about this article? Will doctors who hear their colleagues are compensating patients for keeping them waiting actually open their pockets too? Or just think their colleagues are a tad naive?

5. Blog about your doctor's lateness - I am sure the author's doctor reads her blog and will change their ways.

My basic theory on dealing with lateness (which makes me incredibly crabby) is:

People get one 'being late' per year from me. Otherwise I start with out them. The only exception is a real emergency - flat tire, etc. I do not accept reasons for lateness in that they didn't get out the door on time again. If you are chronically late, you will find you never see me because I don't wait around.

The reasons I do not tolerate lateness are:

- Your being late tells me I am not important to you. You do not value anyone else's time but your own.

- You have poor time management skills. You probably do your takes at 10pm on April 15 and pay your bills late as well. That's your problem not mine.

- Its just plain rude.

The real reason I have less tolerance for lateness is that I am not capable of standing around and waiting for people. I have a limited capacity of how long I can be out doing stuff before I get tired and have to leave. If I spend all the time I that I feel good waiting for you, I won't enjoy any of the time we are together as I will be tired and in pain.

Where I go for all my medical stuff is a nice hospital which in general runs on time, or tells you. Most departments have a sign that says if you have been waiting more than 20 minutes, please tell them and they will find out what is going on. I can live with that as I understand that a lot of the reasons behind it are beyond their control. In the meantime, if you are meeting me, don't be late.