I'm ready for my annual 'I Survived Pinktober' T-Shirt

Today is the end of Pinktober. I will celebrate Halloween. I have candy hidden for the trick or treaters. I might wear my feather boa when I answer the door (that's the only costume I came up with this year - it will go nicely with my Sunday evening at home sweatshirt & jeans). I will also remember those who did not make it.

But I will also celebrate the end of Pinktober. As this opinion notes, there is a strong disconnect between the pink products and the pink cause. Neither of which we really need. We do need more cancer research. Skip spending money on pink products and send in your checks to cancer research.

If you buy pink encased lipstick celebrating Pinktober, did you know that lipstick could very easily contain chemicals which are known carcinogens? Or all those plastic thingies are made out of petrochemicals which are also known carcinogens? Think before you pink.

As you know I do not consider myself a cancer survivor but I do consider myself a Pinktober survivor. For that I need a t-shirt.

Gimme that shot please!

I go to the back doctor on Tuesday to discuss how my new back meds are working and what are the next steps which are sure to involve more needles. A few years ago I would never have asked for a needle. I still can't look at them. But I am becoming an avid fan of needles full of cortisone for my back pain. They have proved very helpful.

But of course, just as I am starting to appreciate them, there is a new study which doubts their efficacy. (Damn these medical studies.) I think (as my little chemo brain dissects the article) that the problem is people come in with tennis elbow and other injury/overuse type issues and get a cortisone shot. Yes they get instant relief but then they also are prone to reinjury. This is opposed to waiting and taking it easy for 6 to 12 months. Well this makes sense.

If you are forced to change the way you do things to let something heal, you are reducing the risk of reinjury because it gets time to heal and you are changing your habits. If you just get a shot and it feels better, and you are not forced to modify your habits and take it easy, it would seem logical that you would repeat whatever you did and reinjure yourself.

But with my back I think its different (they could not be talking about me in that article) because my back is just piling on the pain and we are trying to ease the pain in specific areas so I can do things like sit, stand, walk, or lie down or reach for things or roll over in bed or cook dinner or bend down to feed the cat etc.

Needless to say, I will go talk to my doctor about more needles that I don't have to look at because he puts them in my back where I can't see.

The ultimate recycling

So what are you going to do when you die? No I am not morbid, I am practical. I can't decide. Probably cremation but then what. For the cat, it is definitely cremation and then a little plot in the back yard somewhere. There is not much of a choice. I have friends who keep their pet's ashes in the closet. But for people it is a little more complicated.

Apparently there are some choices. Its the ultimate recycling instead of just decomposing in the ground. But there are also green burials where they skip the nasty embalming chemicals and use a basket instead of a casket.

Here is a list to choose from.

1. Donate your organs - well that's easy. I can do that one. I can relate.

2. Donate your tissue - that's also easy. Could I do 1 & 2?

3. Will your body to a university - so some future doctor can dissect me? I think not. Yuck!

4. Help doctors practice their skills - Ew again. No. No extra incisions.

5. Leave your body to "the body farm" - this is where they figure out how long it takes maggots to show up on a dead body. No. No. No. No bugs in me.

6. Become a crash test cadaver - No again. I don't need a car accident - even after I am gone.

7. Give your body to a broker - who will sell your parts for science, research and training. Um, no again.

8. Send your body on tour - with those Body Worlds. No. My flabbiness will not be exposed in plastic for eternity.

9. Become a skeleton - for a school or some place where students will pose you in weird positions as part of a prank or you get hidden in closets to fall out on people. Dont think so!

10. Be on display at a museum - A special museum at the College of Physicians. No, see flabbiness note above.

Hmmm... I'm thinking donate tissue and organs and then cremation. That I can do. But would my estate get a tax credit for the donations after I'm gone? I'll go ask my accountant that one.

Sometimes I need to ignore what they say

Next Tuesday I have an appointment with my pain doctor. I have been hoping he will deem me okay for another cortisone injection in my left hip - so I can walk with less pain. I have already had numerous injections in different areas. Sometimes just one injection works but other times it takes 2 or 3 in a specific area. If they don't work, we get to move on to the wonderful radiofrequency denervation which is NOT fun but is supposed to kill nerves. I have mixed feelings on this so far but I like the cortisone injections. They have done well for me so far.

Then they come up with the theory that cortisone injections aren't as good as they thought they were - they have only been used since the 1940's so you think they would have had long enough to figure this out so far.

I was concerned when I read the article headline that they might make things worse, not better. Then I decided that this is not meant for people like me - they are referring to injury caused inflammation like tennis elbow where the injury will heal up if left to itself. My case is different. My pain causes are not injuries that might heal. They are unhappy nerves being squished some place along the way because the degenerating disks in my spine are no longer holding up their share causing squishing of nerves (another technical term). So obviously they aren't talking about me so I will happily go beg for an injection next week.

Three additional comments on my back pain: With each treatment, they are hoping to resolve the pain in that area for at least a year so they don't have to go back and treat it again. Sometimes it takes two or three treatments to get it to a level where it is stable for a year or more.

Also, when each area is treated, they need to wait six weeks to see the result and let the area recover from the injection and see if it has the expected result or needs additional treatment.

Finally, as each area is treated, more areas of pain seem to surface. So I am supplying a never ending source of pain to be treated. How lovely.

Now gimme the damn shot!

Rememberance

Pinktober is (finally) winding down. I survived and did not buy anything pink but I did get Halloween candy (which is hidden to ensure its survival until Sunday). But there is something more we can do in October. If you haven't, I suggest you donate to breast cancer research, not awareness. Don't buy something pink with a portion going to breast cancer research but send something directly to the Breast Cancer Research Foundation (www.bcrf.org) or go to breast-cancer-research.com and find another research based charity to donate.

In addition, this was sent to me by a friend who got it from a friend who got it off a message board somewhere. Make Sunday October 31, your day of remembrance as well.

Breast Cancer Awareness Month is winding down. I'm relieved it's over with and glad that I succeeded in some small way of creating more awareness for metastatic breast cancer. I will start earlier next year and build on what I've learned.

But I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers.

I will wear black, not for its funeral implications but for its simple dignity, a quality that has been sadly lacking these past 30 pink saturated days.

At 8:45 that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.

My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.

Time slows down as you approach the speed of light.

I'll think of those whose time was all too brief and I'll hope for brighter days ahead.

Oh, hi, I have cancer!

And then the thud as the elephant steps into the room. And the stretch of silence expands and you nervously giggle and the other person slowly backs away and looks around for someone else to talk to. Cancer is the ultimate conversation killer.

After a cancer or any other nasty diagnosis, how do you tell people you meet about your medical issues? The people who are with you on the medical roller coaster know everything. But then you meet new people, do you tell or don't you? New co-workers, new jobs, its none of their business. But new friends, new love interests, do you tell or don't you? When do you tell them? HOW do you tell them?

Depending on what kind of medical ailment you have and the maturity of the person you are talking to, you will probably hit a range of responses:

- Oh, can you excuse me a minute? I need to use the rest room/talk to someone across the room/go get a new drink. I'll be right back. (Yeah, sure, see you in the next century.)
- Oh, that's no big deal. My uncle's neighbor's hair dresser's dog walker's cousin had something like that 30 years ago and I hear they are still fine. I heard they had some kind of experimental treatment in Abu Dhabi and it cured them. (Gee thanks. I'll go get my passport to see if they can help me too.)
- Well, that's a bummer. How are you doing these days? Do you want to talk about it? (A human being! Cool.)

What if its just someone over the years who you have gotten to be good friends with. You met them after the medical disaster and they have turned into your best friend.

Or let's make it a little more complicated. You meet someone you REALLY like. You know the one you want to spend the rest of your life with and somewhere between the first date and the 'I do's' you need to figure a way to slip this little factoid in.

Since I have run into these dilemmas myself, in my experience I have learned:

- Tell them at a time when you are sitting around talking in a quiet place where you can talk. Not in a loud bar screaming over the music.

- Be open and honest and tell them why you didn't tell them before. If you were co-workers, maybe its not something you run around the office announcing. Or if its only something you tell the people that are closest to you.

- Be prepared for them to say they can't deal with it or just ignore the medical elephant in the room and ask if you are ready to order dinner. That tells you that they weren't worth the effort.

Its unfortunate that some people either just can't deal with your medical issues or prefer to ignore it and pretend it didn't happen. They aren't your friends if they can't accept you for what you are.

Radiation anyone?

In treatment for thyroid cancer, patients are often given a dose of radioactive iodine which will dissolve any thyroid cancer cells. But as you swallow radiation, it is then released from your body in its normal processes - sweat, saliva, urine - over the next few days. Now a days, patients are released from the hospital the same day and told to stay away from pregnant women and small children, sleep alone, and not share food or drink for a few days. Apparently before 1997 the NRC mandated hospital stays during radiation decay.

I don't remember this part. I don't recall being hospitalized for radiation. I think I was given radioactive iodine and sent home. My brain is a sieve but you would think I would remember that.

But the problem now a days, is patients who don't live near their hospital/place of treatment are then spending the night in a hotel while emitting radiation. Who knows who is going to stay in that bed next and get exposed to radiation? Who is going to clean the room and get exposed to radiation? (Between bed bug scares - which make my skin crawl - and things like potential radiation exposure that make me want to avoid hotels for ever.)

I don't think of radiation as being this really scary thing. I worked for a scientific instrumentation company which had many machines that use radiation as well as manufacturing systems for measuring different kinds of radiation. Any radioactive element has a half life which is how long it takes to decay. Some have a half life of 3 days and some of 3 million years. So somethings that were radioactive are no longer. I believe (in my non scientific brain and through reading posts like this read all the way down to the last one)that RAI is radioactive for a few weeks but you can expel it from your body sooner through its natural processes.

But it is a conundrum - if you get a treatment involving radiation, when can/should you be released into the general public? Are insurance companies again making unsafe decisions?

The M word

In cancer there are two nasty words no one wants to hear. The R word - recurrence - and the M word - metastases. The R word means it came back. The M word means it spread to other parts of your body. Quite often you get these words together as cancer often returns in another body part.

However there are some people who are diagnosed initially with metastatic cancer meaning they have a primary tumor or tumors and it is also found in other body parts. For them a cancer diagnosis is a double whammy. Not only do they have cancer, they have in multiple areas where it needs to be treated. It means (in my non medical mind) that it is in your system and you need to be treated systemically, not just locally as with an early stage cancer. And the treatment and the scrutiny will continue for the rest of their lives.

At the initial diagnosis, when cancer is found they test to see if they can find the cancer anywhere else. If they do, that's the M word.

The sad thing with metastatic cancer is that very little research is done in this area. I think the percentage of breast cancer research that focuses on metastatic breast cancer is somewhere around 4%. That is extremely low. Wouldn't it make sense that to look for not just the cause of cancer but why it spreads or returns? I have several friends who are in this boat.

Any time a person living with cancer goes back to the doctor, particularly to the oncologist, all we are thinking as well go 'no M word, no R word, no M word, no R word, no M word, no R word...' over and over again. Tell me I have a bleeding ulcer, a broken leg, degenerating back discs, gall stones, kidney stones, lymphedema, benign anything. But not the M word and not the R word and I am happy.

More on blogging, news and privacy

Back in July, I blogged about this same topic. A year or two ago I was asked by the very same organization that I work for now if I wanted to be included in a weekly series the local paper was doing on breast cancer people as part of their Pinktober series. I declined. This year I was asked directly by a reporter for the same paper if she could write a story about me and blogging as part of their Pinktober series. This time I accepted.

What made me change my mind? A few things. I am in a more settled place mentally with all this. The article is not about me and my cancer(s) but about me and my blog as a way of coping.

Also, the whole thing about the internet and privacy. There is no privacy on the internet. We are all online. Unless you live in a cave these days and keep your money in a coffee can and never buy anything, you can be found.

So I am in the paper. It is online. My blog is online. They are linked together. I am part of Pinktober. But I didn't spend a cent.

The picture of me is really crappy. I had hoped they would use more of it. Its of me standing in front of a little lighthouse. They cropped it down to me so I look like crap.

They don't know

They don't know what causes thyroid cancer. Genes, environmental factors, exposure to radiation? When you go to the dentist and they cover you with a big heavy protective blanket during x-rays which includes a collar, they are protecting your thyroid from radiation. (I always think they can skip that for me.) It is thought that exposure to radiation through xrays or radiation as a child can cause thyroid cancer. But apparently if you are near nuclear reactor fallout you have a greater chance.

But the cancer cause mystery prevails. They have thoughts but no real idea. Well, keep thinking because I'm still waiting. While you are at it, you can find a cure too. Thank you.

I don't like this idea

I understand the desire to rein in health care costs. I understand that cancer is a very expensive illness to treat. I understand that having standard treatment protocols is a usual practice. I don't understand why insurance companies are trying to get involved with deciding doctors need to follow standard protocols for cancer treatments as a way to control costs.

One of the things you learn with cancer is that every cancer is different. You can take two patients with the same cancer diagnosis and their treatments may differ. Tumor aggressiveness, lymph node status, tumor size, age of patient, other health issues, etc.

In cancer staging, there is some wiggle room. For example with my diagnosis of Stage IIA breast cancer it is defined as one of these three conditions:

'The tumor is 2 cm or less across (or is not found) and either:

* It has spread to 1 to 3 axillary lymph nodes, with the cancer in the lymph nodes larger than 2 mm across , OR
* Tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy, OR
* It has spread to 1 to 3 lymph nodes under the arm and to internal mammary lymph nodes (found on sentinel lymph node biopsy).

OR

The tumor is larger than 2 cm across and less than 5 cm (T2) but hasn't spread to the lymph nodes and the cancer hasn't spread to distant sites (M0).'

So with this range of possibilities, it opens up a lot of different treatment options based on tumor size and lymph node invasion alone. The insurance companies are working with groups of doctors to create treatment protocols that might be less costly. Any doctor would agree there are multiple ways to treat a cancer and that the choice of which chemo drugs, the most costly part of cancer treatment, is dependent on many factors. I think the doctor involved in the treatment should be the one making the decisions not a panel of doctors who haven't ever met the patient.

What's going on

I realized that I haven't blogged about me and how I am doing in a while, which was the whole point of this blog in the beginning. I'm doing okay mostly. The cancer business is really in a maintenance phase meaning I go to my medical oncologist three times a year for another two years, I go to my radiation oncologist once a year for a few more years, and I go to my surgeon annually and have a mammogram arranged through his office for life. I also go to the endocrinologist again in January for another thyroid ultrasound and if its stable I will be back on annual ultrasounds for a few more years and then I hope to get to one every five years.

Nearly three years out from chemo, my hair which I used to keep long and straight is now short and the natural wave shows. All the ugly gray which first grew in is gone and I am back to my brown with a few strands of gray here and there. I still get occasional tingles in my fingers from left over neuropathy. The other chemo side effects seem to have faded.

It is harder and harder to lose weight - is this aging or as a result of cancer treatments? The same can be said for my lack of a brain - due to chemo or aging? I don't know but I will claim chemo brain for a while and will look for my inner size six that I know is still there.

My current medical issues revolve around my left ankle which is still painful and I think I will have some clean out surgery in December as it is not any better. My back is my central complaint. I have had three treatments to relieve pain this year alone. I take two pain meds and an anti inflammatory for my back. This is not a situation which will change anytime soon. Two years ago it was not a problem at all. As one area is treated another area shows up. It is not fun and is a life changing event. But its not cancer - is that a cheery thought? I don't know - its a life long problem as well.

Emotionally I am feeling okay. I take antidepressants and see my therapist regularly. I am on an even keel and am coping with life. Do I sound like I mental disaster? I hope not. They say after a cancer diagnosis there is a sense of PTSD and that 25% of cancer patients are treated for depression after the fact.

A lot of the stress is off me in that I am no longer going to the doctor every week or so. Now I am going every month. Every time I pull into the hospital parking lot, the stress of the whole cancer roller coaster returns at some subliminal or not so subtle level. It is easier to stay off the roller coaster when I stay away from the hospital.

Four years ago I was working in downtown Boston and looking for another job as my work schedule got me home from work two hours after my husband and my boss was impossible. I wanted a job closer to home. I left my downtown job and got a job closer to home and got laid off two weeks before my breast cancer diagnosis. This little quirk of fate allowed me to switch my life into volunteering, working part time and for non-profits which actually makes me happier than trying to juggle medical issues and a full time job in downtown Boston.

My husband and I are happy in our lives. We both have taken turns being patient and caregiver which gives us a new perspective on things. Anyway, that is my life in a nutshell now. I am doing okay but my life is forever changed again. The only thing I regret is getting cancer a second time and I had no control over that.

What I didn't know about clinical trials

I had never really wondered when clinical trials started or how we got to where we are with a dysfunctional system. Between my two recent posts on thyroid cancer and long term side effects of medications, I was doing some research and found this article talking about the history of Synthroid or levothyroxine as it is named now. Then I found this timeline which shows how the FDA didn't have as much authority until 1988 - just over 20 years ago.

I found several things surprising in this information:

- Medical doctors recognized thyroid issues a long time ago - late 19th century but it took another 60 years before they had a medicine to replace it.

- Some of the early medical treatments make my skin crawl - pig thyroids, vinegar, boiling oil, etc. YUCKY!

- Synthroid or now Levothyroxine (it took me a long time to learn to pronounce that hence my personal rule that you can't take any medicine or have any ailment unless you can spell and pronounce it) was unapproved for so long and that the doses were never tested until ten years ago. When I started taking Synthroid it was the only brand on the market. I was given a dose that was .200 mg (milligrams - 1000th of a gram) or 200 micrograms. My dose over time has changed from 200, to 150, 125, 137. But I know there was a time when as many variations were not available as for a while my endocrinologist had me taking half a pill on Sundays.

- Prior to 1962, drug companies only had to say a drug was safe. There was no regulation. If a drug was marketed before 1962, it was grandfathered into the system and no clinical trials were required. It was only after complaints that Synthroid went through clinical trials in 2000-2002.

I can also add that I was part of a lawsuit of Synthroid purchasers who were forced to pay high prices for it for years because it was the only one on the market - the manufacturer had monopolized the market and forced higher prices for it on to the consumer. I think I got nine dollars and change for this.

So now nearly 50 years later into clinical trials, and just over 20 years of FDA regulation we have a system which is over burdened and stressed. It hasn't taken that long for the system to fall apart.

Backwards medications

Some medications act backwards - they cause the problem they are prescribed to prevent. So I think of them as backwards. A recent example of this is the drugs prescribed to prevent osteoporosis rarely cause degeneration of the jawbone or fractures of the thigh bone.

In a nutshell, here is how my non-medical brain understands this: Drugs are okayed through clinical trials. There is increasing pressure to decrease the length of time of clinical trials to speed drugs to market (which is another post all together) - now I think of them as taking around 3-5 years of human tests. But then we have an aging population who is living longer with chronic conditions. Take the two together and we have populations who are taking prescriptions, or even OTC medications, for five times or more the length of the clinical trials. New long term side effects are then discovered.

Now I have been on synthetic thyroid hormones for nearly thirty years. I seem to be doing okay. There are issues reported with bone loss if you are on it for long term. So if I live to be 80, I will have been on it for sixty years. Do they have any studies for people who are on it for that long? Probably not.

This is another issue in modern medicine. Aging populations who are on medications for decades. What about these really long term patients and their side effects? Another factor in the problems of redesigning clinical trials.

Behavior when faced with something bad

A homework assignment for all: Go read this article about how to behave and react when faced with the news that someone you know has cancer or some other lovely problem that could be life threatening and/or long term.

The author does an excellent job. I couldn't have said it so well at all. I can sum up my feelings in a much shorter list (I think).

First of all expect that you are going to do it all wrong - especially if you react like I would with a case of foot in mouth disease. When I was first diagnosed I finally got my husband to read a book called the Breast Cancer Husband. He told me he liked it because it started off by saying that however you reacted when your wife told you she had breast cancer, you did it wrong. But that's okay because probably nearly every husband did it wrong as well. The point is we are not perfect and it can be very difficult to keep one's mouth shut and contain one's reactions.

Never assume the worst. Life as a patient is full of rosy optimism because we couldn't handle it any other way. You don't need to be cheerful but you can try to be normal.

Just because someone you know was successfully treated for their disease, doesn't mean it will work for the person you are talking to. This is my pet peeve. Just because your neighbor's cousin's hairdresser's dogwalker's nephew had the same thing 20 years ago and did (or didn't) make it, things are different. Every cancer is different. Every disease is different. Medical science is progressing and treatment protocols change. Keep your mouth shut here as well.

Don't assume they are unable to do things unless they tell you. I was offered meals on wheels or some other food delivery service and was offended. I love to cook, no one was going to bring me food unless I was in a coma.

Whatever you do don't break down in tears or start wailing to the gods or praying out loud while you are with them. If you feel the need to do so, wait until you are in the privacy of your own home.

What can you do? Ask how they are doing. Treat them like a normal person. Tell them about the jerk at work who makes your life miserable. Tell them about the adventure you had when you tried to go shopping for new shoes. See if they want to get together. Even people in treatment might want to meet for a cup of coffee. Maybe you could stop by and say hello.

Sick people are still people. They need to hear about real life as well - even if they are trapped in an endless round of medical visits and treatments. We may have had our own mortality shoved in our face a bit more forcefully than expected but we still have feelings and hope.

Time to switch cancers

It may be breast cancer pinktober but I am going to talk about Thyroid cancer today. My other cancer that gets ignored. By the way, September was thyroid cancer awareness month. I didn't see much awareness for it anywhere.

When I was diagnosed with thyroid cancer there were somewhere around 12,000 cases diagnosed each year. This year there will be around 44,000. Thyroid cancer is one of those who is greatly increasing in incidence. The increase in incidence is thought to be partly due to to increased exposure to radiation through xrays and other tests. And also due to increased screening and improving technologies for diagnosis. Apparently most tumors are now found to be papillary and 2x2cm or smaller which are considered to be nonproblematic by some doctors.

There are several kinds of thyroid cancer. Anaplastic, the rarest, is the bad one. If you are diagnosed with it, it is automatically Stage IV and treatment options are limited as it is very aggressive. This is what killed the Supreme Court judge a few years back. Medullary, slightly more common than anaplastic, is somewhat different than the others with slightly lower survival rates. Follicular, more common than the two above, is considered relatively aggressive. Papillary is the most common, accounting for over 75% of thyroid cancer cases diagnosed. It is very treatable.
Survival rates for all but anaplastic are in the 90%s.

Thyroid cancer treatment is fairly straightforward. The thyroid is surgically removed. Radioactive iodine treatment is used to dissolve any thyroid remnants. A synthetic thyroid hormone is taken for life. Sounds pretty easy? Well sometimes they have to go back in surgically as they didn't get all of the tumor. Sometimes you need multiple doses of radioactive iodine. Sometimes a patient has a hard time getting settled on a dose of thyroid hormone and has to constantly change doses. You get follow ups to check blood levels regularly. You get ultrasounds periodically to ensure no regrowth. And thyroid cancer can recur 20, 30, 40 years later. Those of us who have had thyroid cancer call it a 'lifetime of vigilance'.

But cancer is cancer. Even if you get a 'curable' cancer you are never cured. How did you get lucky enough to get cancer the first time? Do you still have cancer cells in you? Did they get it all? They don't know.

Today is blog action day

Change.org|Start Petition

I had completely forgotten about it. Blog action day is held annually on October 15. This year the cause is water. Water is a problem in many parts of the world. Not just in 3rd world countries but right here in the US. Not everyone has easy access to drinking water even though the country is one of the most advanced in the world.

This is a basic need that we must deal with. What about the dam that broke and threatens the Danube? That is just one of the most recent events in a long string of them. Save water. Don't pollute water. Don't over fertilize so nutrients wash into the local water supply. We can all help.

I am not alone in this pain business

But first color me appalled about pink tire caps! Yes the little caps on your tire valves are available in pink from Tirecraft.

Apparently 76 million Americans live in chronic pain. The word chronic means its not going way anytime soon. While its nice to know I am not alone, I find the results of the survey interesting.
- 48 percent of respondents don't believe that proper treatment can ease chronic pain. - Did they even talk to their doctor? My husband always says to me that the doctor can never fix his sore shoulder, etc. But then he goes to the doctor, tells him about it, and they send him for PT and voila he is fine.
- 41 percent believe pain is a normal part of aging, and 10 percent simply ignore the pain. - I'm all for ignoring pain as long as possible
- 36 percent would refuse doctor-recommended or doctor-prescribed pain medication for fear of becoming addicted. - Um, its not like you are a street junkie if you are taking your prescribed medication. If you have concerns about becoming addicted, talk to your doctor. They will help you with your concerns.
- 34 percent believe pain medications that cause side effects are worse than pain itself. - I hear this one a lot. I know people like this. Its stupid. Take the damn medication. If it doesn't work for you or if you have the side effects, you can switch to another pill.
-31 percent would not speak to a doctor about their pain for fear they could not afford treatment. - Well if you have financial issues, talk to your doctor. The first steps I was given was PT. You can learn exercises that might help you and then do them for free. Tell your doctor you can't afford a lot and see what they can suggest that is free.
- Only 18 percent would speak to a specialist if they were suffering chronic pain. - Why? Is the magic genie going to grant you three wishes to relieve your pain? What's wrong with a specialist? I see lots of specialists.

A medical doctor is a human being. They don't want you to be in pain. They will help you as much as they can. But since most do not have ESP you need to talk to them about your concerns. Don't live in pain.

Additional note: In response to a comment below, I want to add that if someone is willing to live with their pain that is one issue. But if the pain interferes with their daily life and they are stuck on one of the reasons above, that is not a good reason to live with it. But if you talk to your doctor and they tell you what your options are, it is your choice to follow them or ignore them.

Crap, am I making sense?

Clinical trials: research vs marketing

So its not just what the clinical trials are about but also who is running them and who is paying for them that is important as well as why they are running the trials.

The article uses an example of a Jenny Craig weight loss trial as their example but the point is true for any clinical trial. For many companies a clinical trial is important if it can get into one of the peer reviewed magazines where they trial gets a great deal of credibility in the medical/scientific world.

A peer reviewed magazine has stringent requirements for including articles. They must not be marketing. They must not be sales. They must be scientifically or medically based and show a significant result. The articles are reviewed previous to publication by a 'peer' who is on the article's staff or is a consultant. What is a peer? If the article is for the medical world, meaning for doctors, then a doctor will review the article first. Same is true if it is for chemists or physicists, it will be reviewed by a 'peer'. This means that the magazine's content has met both its submission requirement but that a 'peer' has reviewed it and agrees. This ensures the continued credibility of the magazine.

So if a clinical trial gets into one of the 'peer reviewed' magazines, then it certainly must show something important. This is a goal for many companies so they do research trials that meet the guidelines to show the benefits of their product and get their article into one of the credible journals.

We have all seen this in the news 'The JAMA has published the results of this new trial showing a breakthrough in treatment...' We get all excited and run to our doctors to ask about it and the doctors say 'more research needs to be done'. We say 'WHAT'??? That's because a good doctor often wants at least two trials to say the same thing before they change their treatment protocol for the average patient who is responding to treatment and still has approved options available. There are exceptions to this in the case of early stage clinical trials for people who are running out of options.

Another issue is that an early stage clinical trial may be reported that is no where near the human trials stage - also known as the mouse tests where it will be several more years before trials will involve humans. But the publicity is there building premanufacturing awareness for a product and more credibility for the company.

Do I make sense? Manufacturers use clinical trials as marketing tools to build their credibility and allow them to maintain or increase their market share.

The Annual Physical

As a child you would go to your pediatrician and, after reading 'Highlights' magazine in the waiting room, you would sit there in your underwear and they would measure and weigh you, check your eyes, ears, nose, throat, pulse, heart rate, ask questions about how you have been. You might get a shot (followed by a lollipop) and off you would go.

Now, you go to your primary care physician once a year, or as frequently as your insurance allows, and the nurse might measure your height and weigh you (I always ask that they subtract 20 lbs but I don't think they do). The nurse checks your temperature, pulse and blood pressure and you change in to a lovely Dr. See-More-Buttz gown and wait for the doctor. When they come in, they sit and ask you a few questions, check heart and lungs. Maybe a quick peek in your ears and down your throat. They might send you off for blood work or other tests. And that's it for another year (unless you are like me and other 'issues' crop up where you get to return for more fun tests). Your 5-10 minutes of doctor interaction are done.

Today health care is rushed. Your doctor is rushing from one patient to the next. Insurance companies dictate many things. Hospitals are trying to cut costs by scheduling shorter appointments. Doctors don't have time to spend with you. They are also often relying on expensive tests to tell them the things they don't have time to look at. Do you remember the days when they would send you for a test and tell you to come back in for the results? Now you are lucky enough if they remember to call you in person, instead of sending a letter in the mail.

Isn't the annual physical something that people had as part of preventive care to catch things before they got bad? Dr. Verghese wants to revive the lost art of the annual physical.

I do go for an annual physical each year. When I leave sometimes I feel like "That's it? That's all it is?". Should the doctor have spent more time with me? Didn't I have more questions? I head off for blood work and my annual chest x-ray (I have had a thingy in my lungs for nearly 30 years and there is an annual picture of it in my medical records for the duration). My current PCP will send me a copy of my xray report and blood work with a little handwritten note scrawled on them.

I hope other people get as much attention as I do but am sure that many skip their annual physical, don't have insurance, or for whatever reason. I don't get a lollipop anymore but I still feel cared for.

Chemo brain or cancer brain?

So maybe it wasn't chemo that made me a space shot... Maybe it was having cancer itself that did it. So if I went through it twice, I am at two levels of spaceshotness. I asked my husband to confirm this and he said 'for a spaceshot yes, this would make sense'.

The real term is cognitive impairment. As discussed previously, they are several arguments for or against this. Is it just what happens to your brain while aging? Is it a symptom of PSTD? Is it a side effect of menopause for women? The answers may never be known because they probably will never be able to pin it down

But I digress. We are almost halfway through pinktober, well just over 1/3 of the way. I see the trend this year as to people questioning awareness vs. research. I have seen glimpses for this, not just with Dr. Love's interview. I have seen more pink objects than I care to count.

Needed: not awareness but research

The world is bathed in peptobismol pink through the month of Pinktober - formerly known as October. We are all aware of breast cancer now. We don't need more awareness, we need research. We should stop spending money on pink paint, pink ink, pink fabric, pink dye, pink thread, pink silk screening, etc.

Dr Susan Love, a respected breast surgeon and founder of the Dr. Susan B Love Research Foundation, explains it concisely. In the US, we give researchers funds and tell them go tell us what you find. What we need to do is give them funds and say 'find a cure'. We need to give them a goal to attain - some direction as it were.

She says it for me. This is what I think of Pinktober.

Veggies or Fries?

We all secretly prefer fries but say we like vegetables and even claim we eat them. But apparently we lie and don't eat our vegetables. We should. French fries are probably the worst vegetable to eat. The potato isn't bad itself but anything deep fried (especially twinkies) lose all nutritional value inside a casing of grease, fat, and salt.

I personally would love to eat french fries several times a week. Last week I had four - four individual french fries because the local sandwich shop at work has returned to the original way they make them (and they are extra delicious). Someone got an order and offered them (actually the person who went and picked up the food offered me some of another co-workers fries). But I digress. I only ate four french fries. I think I stole a couple off my husband's plate a month or so ago. I do not each french fries regularly. Just say 'one gram of fat per fry' and if you ate a whole order that would probably be around 50+ fries and most people shouldn't eat 50 grams of fat in a whole day, never mind in a side dish.

I have been accused (by my husband) of sticking vegetables into everything. I see nothing wrong with it. He claims he eats too much 'green stuff'. I put spinach on pizza and think nothing of it. He tells me it doesn't belong on pizza and pizza always must be topped with 'dead animal'. But I make him eat a salad first.

Sometimes I restrain myself and skip the extra snuck-in vegetables but not always. But where did all this vegetable eating get me? Fighting the battle of the bulge and cancer twice. I do admit there was a time in my life where I smoked and lived on Diet Coke (or Tab) which I now consider a 'chemical food' but I have always been happy with a salad for lunch. I grew up in a house where dinner always included a giant salad (eaten after the main course - I never thought that was weird until I went to college).

Vegetables are full of vitamins, fiber, and all sorts of other good stuff. Skip the fries and have a salad.

I'm back

What's on my mind? A lot I guess. I am sick of pinktober. I was in the grocery store there were so many products with little pink ribbons. I felt like the store was dipped in pink. Is buying a bag of chips or can of soup with a little pink ribbon on it contributing to a cure for breast cancer? I don't see the connection.

If I put on my psychology hat for a moment, I can say this all goes back to my refusal to call myself a cancer survivor. I am not a cancer survivor. I am a person living with cancer. I only survived a bunch of doctors appointments - somewhere over 150 in the past three years alone. I am no psychologist or psychiatrist but perhaps there is a tie in.

The local weekly newspaper last year for the month of October published their issues on pink paper and interviewed breast cancer people each week. I declined last year but this year I am actually being written about as someone who blogs to deal with cancer and other health issues. (More about that when its published.) But what does a pink newsprint have to do with breast cancer???

Maybe pinktober makes me cynical? I'll just be a cynic for the rest of the month. That works.

Blah, blah, blah

I got as far as a title this morning. Got distracted by house guests. My cat walked on the keyboard and posted the blog with a title only. Now I am back and all I can write about is being fed up with pinktober. Perhaps I will be more profound later. Bear with me please.

We have a long way to go

Advances in cancer treatment. The war on cancer is 40 years old and where are we? With a long way to go. The National Cancer Institute has published a series of summaries of where we were and where we are going with cancer treatment. They cover colorectal, breast, cervical, prostate, and brain cancers in detail and provide some insights into what specifically in what they are working on. However the general cancer one is disappointingly brief. They summarize the cancer treatment in the world of tomorrow as:

"* We will exploit our rapidly increasing knowledge of genetics, molecular biology, and immunology to develop even more effective and less toxic treatments for cancer. This knowledge will also allow us to detect cancer earlier, when it is most treatable, and to individualize patient care.

* We will continue our efforts to expand knowledge of and access to palliative care, to eliminate cancer-related health disparities, and to ensure the best possible outcomes for all cancer patients."

This tells me that while they have made advances with individual cancers (which sound pretty darn technical) they have not made advances overall. Cancer is actually hundreds of different diseases, not just one. While its nice to see some advances, we need some real advances and cures.

Think of it this way, if we are in a war on cancer, the front lines aren't moving but every so often we win a little skirmish.

What is the new normal?

After cancer, they tell you that you will have to reach a new normal, you aren't going back to the way you were. What was normal for you before is not going to be normal any more. You body has been subjected to one or more surgeries. Maybe some radiation and chemotherapy. You may have less energy than before too.

Your stress level went through the roof. You are now living in the land of 'what if it comes back'. Which is a little stressful in itself. You have many more doctor appointments that before and each one has its accompanying stress pull. For the past three years, I have had more than 60 appointments each year.

Physically you are not the same either. You probably have a new hair style as your hair grows out of its chemo-cut. Weight gain is not that unusual either. New aches and pains are not uncommon as chemo has some fun side effects. And the surgical scars...

You are trying to balance all the advice and suggestions. Eat healthier. Eat lots of plants. Eat soy, no don't eat soy, eat soy, no don't. You try to exercise more. You cut out all the things you like - alcohol, chocolate, dessert, fast food. All are steps to prevent the r-word (recurrence) - you are doing everything you can to prevent it - but is that enough? Is anything enough?

So what is the new normal? I'm not entirely sure. First I need to add that in my case, I have had several other medical issues of the non-malignant kind since the end of my cancer treatment - gall bladder surgery, bad back, ugly thyroid ultrasound, touch of lymphedema, etc. My back is an ever worsening adventure which has no cure, just lots of pain. Also, my husband had his own fun little cancer adventure last winter which added to my stress level.

However, somehow over recent months I feel my life has settled down to a level where I can cope for the most part. It helps that now I seem to go to the doctor once or twice a month instead of once or twice a month. It may be partly due to the medication I am on but I'm okay with that. If the medication is what it takes to reach a new normal, I can deal. Does it mean I need to take it for a long time? Possibly. But I also take back and thyroid medication for life. A friend of mine phrased it as 'better living through chemistry'.

Is this normal? I am not sure but its liveable and that's the important part.

Its not about the jobs

In case you have been sleeping for the past decade, there has been a big controversy over stem cell research - particularly that using embryonic stem cells. Its been a bit of a roller coaster - yes it can be federally funded, no it cant, yes it can, no it cant... and now its waiting on a Supreme Court decision.

The research itself does get into some ground breaking stuff - diabetes, cancer, etc. Its also expensive - $200 million this year alone. But apparently the scientists doing the research are worrying about their jobs. Well yes that is a concern. Anyone's job can just go away. There are no guarantees for any job these days.

A few thoughts here:

Isn't the idea that ground breaking research might be put on hold a bit more disconcerting than the fact that 1300 people might have to find new jobs? No one wants to lose their job but let's not lose sight of the fact that the research might be more important than the jobs?

Why is it a given that the federal government should fund this research? Regardless of the embryonic or other stem cells issue, is the federal government supposed to fund this? I am sure the government funds all sorts of things but who thinks they are required to fund this in the first place? What if they had to get other funding like a lot of other research does?

I am not questioning the right or wrong about the research. But is the government supposed to fund research? Why are they supposed to fund it - because they always did? Even if the Supreme Court allows it, what if the budget didn't have room for to fund it?

I don't know but I think something is a little out of whack here. Its not about jobs. Its about research and breakthroughs. Its about coping with change if needed.

I wouldn't be worried about my job. I would be more worried if research was derailed. Even if they get funding, from whatever source, they could still lose their job.

How to lose weight

Now there's a headline which I am sure garnered either a second look or a sigh of 'not another pile of crap'. Well I actually like this list so I am going to write about how to lose weight. But first the news this morning tells us that the best way to lose weight is to get a good night's sleep. Not sure what one has to do with another but I'll keep listening to the news until I find out - maybe it will be before I finish this post in which case I'll tell you why.

The real reason I'm writing is about this new list of how to lose weight.

1. Ditch your scale. It is merely a tool to drive you crazy. Your weight goes up by one pound and you get depressed. Your weight goes down one pound and you eat a pizza. Then you repeat the cycle. I will stop weighing myself.

2. To get in shape you need to do cardio, strength training, AND flexibility training. Well this is not me. I will continue to go for a walk every day but the strength and flexibility issues are a problem due to my back.

3. What you eat is important. Just because you are dieting doesn't mean you need to go hungry. Eat real food and good fats to keep you feeling full.

4. Skip the quick diets and fads. (The same goes true for the get rich schemes and the promise of a cure for cancer.) Anything that takes pounds off fast will put them back on right away.

5. Apparently you will miss the old you. You got fat because you ate chocolate cake every night. You might miss that. Pay attention.

I think there are more articles on weight control than on cancer on the internet. Also this morning I have learned that fat grows differently on different parts of the body - this is important because it is some kind of breakthrough. (I need coffee to compute all this.) And if you are fat, you can't remember anything - so can I claim being fat and having chemo brain for being a spaceshot? Finally, if you are tired, you feel hungrier so get more sleep. This is another reason why we need a good night's sleep regularly.

I need to get moving and take a shower - I promise not to weigh myself this morning like I often do. Then I will make us healthy lunches to take with us.

Bullying, bigotry, and other bias

Last week a Rutgers college student committed suicide after his homosexuality was outed on the internet by his roommate and another student. Where they trying to be cool or something by secretly filming him and posting the video more than once on the internet? What were they trying to prove other than the fact that they are insensitive idiots?

Two issues here: First someone's sexual orientation is their issue and not anyone else's. I don't really care what someone's preferences are. Why should I? Their personal decisions don't really impact me.

Also, I do care about not seeing other people's sexual interactions. That is a private activity meant for privacy.

So what was the point here? I do think the actions of these two should be charged under hate crimes and that they get good long sentences for their insensitivity. Some may argue that they will ruin their lives. But they caused another person to decide they made his life not worth living.

This is another example of the bullying that has become so news worthy in recent years. Bullying is all about bigotry and bias. "I'm cooler than you" mentality.

But seriously we are all different. Some short, tall, fat, thin, white, black, Asian, Ukrainian, Swedish, Flemish, Lao, or any number of ancestries, Catholic, Jewish, atheist, Muslim. Why is one better than the other? We should accept our differences in that they are what makes the world and interesting place where we allow our differences to complement each other instead of allow them to create hate, fear, and bullies.

Show them the money

The price of prescription medications are appalling. I am sure drug companies do what all other manufacturers do in any areas - they have product managers who do research and look at costs and what the market will bear and set the prices.

I look at my prescriptions. I personally take six prescriptions daily with another three for as needed. Of them, four are available in brand name only. This means they are newer drugs for which a generic has not yet been developed. Their copays make me cringe. Never mind their full price.

I understand that it takes lots of development work to get one drug to market. Of hundreds that are worked on to one degree or another over years and years, a single drug final makes it through approval to market. The drug companies have to try to recoup some of the expenses for all the others which didn't make it.

The laws were changed a few years ago to prevent drug companies from paying doctors to prescribe their drugs - in anyway. No more freebies - which included everything from a ball point pen to a well padded savings account.

But then why are stories still surfacing of doctors being paid to prescribe or to put their name to ghost written articles to give credence to the drugs? A doctor should prescribe what is medically necessary only. By state law here, the pharmacy must fill a prescription with the generic where available unless the doctor writes in 'no substitution' - generics are close but not exact.

Finally, state AGs are suing drug companies over their huge profits. If they are making such hugs amounts of money that their annual reports show, this is money that belongs to the insurance companies and the patients who pay them. This belongs back to the people who are trying decide which bill to pay - the health insurance premium which is inflated due to high prescription costs, the prescriptions themselves, the mortgage, or the grocery bill.

As I babble away about clinical trials needing change, this is another area which bears a closer look.

Pay for performance

Pay for performance is a good idea. Right? I mean you do a job and they pay you. You do a job perfectly and they pay you more. How does that sound? It makes sense.

But what about paying doctors for their performance? Well the problem is that its paying doctors for their performance with patients. So its not just the doctors that should be paid but perhaps the patients as well.

Seriously, what if your health premiums were lower if you went for annual check ups and preventive tests such as mammograms and colonoscopies as scheduled? Also, if you had a condition, if you actually went for treatment as prescribed by your doctor?

I think that people with health conditions which require monitoring - anything from diabetes and heart conditions to post surgical follow up - it is up to them to get the treatment prescribed. If the doctor wants to follow up six weeks after surgery, go to the appointment so you don't end up in the emergency room because something that didn't heal quite right caused other problems. This should also include lifestyle changes to an extent. If a doctor says, you are going to develop diabetes or have a heart attack unless you eat healthier, get exercise, and lose some weight, you need to make an effort there as well.

Basically, it takes two to tango. The doctor needs to do their job and the patient needs to theirs as well. Maybe because human beings react positively to payment, money needs to be added to the mix. But then isn't money the root of all evil?

I am braced for Pinktober

Here it is again. October used to be full of hay rides, apple picking, Halloween costumes, and more outside fun things in the crisp cool days. But now it has been replaced by Pinktober where we will be flooded by all things pink. Here is a list of a few things I have already seen:

- A book display of a bunch of novels where all were issued with pink ribbons on the covers and and some unknown percent of their proceeds will be donated to breast cancer research.

- An (little bitty) ad for a dress at Macy's where they will donate 5% of the (undisclosed) sale price of the dress to the Breast Cancer Research Foundation - I don't know who this organization is. I looked it up and the dress retails for $99 so $4.99 will be donated for each dress sold.

- A local store is having a breast cancer sale on Sunday. An unspecified percentage of sales will be donated to breast cancer research.

- Eggland's best eggs are supporting breast cancer as well. They will have little pink ribbons stamped on each egg.

This is all I can remember but I am sure there is more and its 630 am on October 1. I can't wait to see what else I am exposed to during the month. I am sure I will see pink ribbons on EVERYTHING!

I think the point is good. Raise awareness of breast cancer, the most common cancer in the US for women. But it can be over done. Everything is pink. It gets a bit ridiculous.

The other issue is that all these things say they are raising funds for breast cancer research but you need to check the fine print. A list of questions and answers is found on the website www.thinkbeforeyoupink.org but I will summarize below:

1. How much money from your purchase actually goes toward breast cancer? Is the amount clearly stated on the package?
2. What is the maximum amount that will be donated?
3. How are the funds being raised?
4. To what breast cancer organization does the money go, and what types of programs does it support?
5. What is the company doing to assure that its products are not actually contributing to the breast cancer epidemic?

Check their site for more information but the real point is you might be better off just sending a check directly to a solid foundation instead. In the meantime, I'll just be braced against the wave of pink.