Cancer again....

Did you know that if you have cancer once you have a 3.5-36.9% chance of getting an unrelated second cancer (been there, done that). And that 70% of cancer people have a comorbid condition which requires better medical care for the rest of their life. So maybe you smoked and got one cancer, 15 years later you find you have lung cancer, eve though you quit smoking at your first diagnosis.

No I don't make this stuff up. Someone finally did a study on people who have cancer once and rates of developing a new cancer. They found out lots of interesting things:

• Many people who have cancer once do not take steps to reduce the risk of getting a new cancer.
• People who are successfully treated for early breast or lung cancer are likely to live a long time, thus increasing their risk of developing a new cancer 
• They are excluded from clinical trials which may prevent them from having access to the best potential treatment for thei new cancer

So where does this leave us? 

• Post cancer patients should continue to see specialists after a cancer.
• They should  receive  counseling on how to reduce their risk of additional cancers even more than people who have not had cancer previously. 
• Post cancer people should be included in clinical trials. 

Us cancer people need to stick together and reduce our risk of more cancer

Happy Halloween!

Today is Halloween. But we will not have trick or treaters until Friday night. Significant portions of the town do not have power and there are still trees downed all over the place.

We had a little storm on Sunday night with wind gusts here to around 50 mph but other places on the coast in the 80-90 mph. A little hurricane came up the east coast and joined up with another front moving east across the country. Their little party was slammed by a Canadian cold front which turned into a massive storm. We got 5" (just think if that was snow) of rain. So no trick or treating for safety's sake for a few days. (But I think all the smart kids are going to get their parents to take them to another town tonight and then back home on Friday so they can trick or treat twice.)

But I digress. Years ago, all my friends and I would dress up in our costumes and go to parties for Halloween. That was possible because we were in our twenties and had the ability to stay up after 10 pm and didn't really care how we looked like. And it was all about having fun.

One year, a friend showed up in regular clothes. We all asked her what her costume was. She said she was a serial killer 'because they looked like everyone else'.

This now makes me think. When you have cancer, you usually pretty much look like yourself and get around, until your cancer progresses and life starts to really suck because it includes a deadline.

So along that thinking, I could dress up as a cancer patient and say 'because we look like everyone else'. Or I could dress up as a rheumatoid arthritis/fibromyalgia patient for the same reason. (Or because my leg is in a big brace, I could dress up as Captain Hook with a peg leg... But that might be too much work.)

My point is that we can easily overlook people because their diseases do not show. We may have some very significant ailments that greatly impact our lives but they do not show to the rest of the world. We are just regular people with health issues. Do we need special treatment? Maybe, maybe not, or maybe just a handicapped parking space. Just remember that appearances can be deceiving and we can be hiding a lot under our normal appearances.

Talking About Cancer, Or Not

I have a lot of friends these days who have had cancer. And then I have friends who have not had cancer but sometimes we still talk about cancer or my health. But then I have friends who do not have cancer or any big ailments and don't really know about the disasters of my health so we talk about other things. Like life.

Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.

I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.

We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.

Further proof there is life outside of cancer crap (and if its cancer, its crap).

It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.

The Changing Focus of Cancer

For 25 years, cancer had a changing focus in my life. Sometimes it would leap back up into the front of my stress levels. The changing levels were mostly due to my health. It used to be pretty good but did have its ups and downs. But I did used to be pretty healthy with cancer staying fairly far into the back of my brain.

I was mostly on an even keel. I say 'mostly' because who can say they are continually positive all the time. After a quarter century of a cancer focus in my life when went from all encompassing to moving to the back of my brain, things changed.

Nearly nine years ago, that all changed when I was diagnosed with breast cancer. Cancer came front and center in my life. Actually it came roaring back into the front and center of my life. One thing else I did know at the time was that I had already gotten through cancer once before so I could be slightly optimistic that I could do it again. A tiny sliver of positive things.

But for the next six years probably it was still important to me and a topic of frequent blog posts. But then in 2013 when I was diagnosed with rheumatoid arthritis and fibromyalgia, cancer has slipped in importance in my life, but still lingers.... After two cancers, its never going to go away.

Now I have a split focus in my life, sort of evenly divided between:

• breast cancer
• thyroid cancer
• rheumatoid arthritis
• fibromyalgia
• all the related side effects from all the related treatments

What this means is that cancer is not completely a giant sucking black hole in my life. This is a slightly 'healthier' balance. Not that I am healthy but maybe a saner balance.

I think anyone when they are diagnosed with cancer, it takes over their life, until something changes in their life and they get distracted. So maybe I have been a bit distracted from the giant cancer focus in my life. But it will never go away. But it is allowing me a bit more of sanity. Who doesn't need sanity?

That awareness thing

Am I the only one on the planet who thinks we do not need more awareness of different cancer types? I mean yes there are some really obscure ones that need awareness and more treatment as well as metastatic cancer definitely needs more options. But really, do we really need an unending calendar of fashion shows, races, walks, and other events?

I may be cynical but I think most of us are too aware of cancer these days. Or is it just me because it has been part of my life for so long?

Uncertainty

I have been watching the ABC Family show 'Chasing Life' since last summer. I don't really understand how they planned the season because it started maybe in June and ran for most of the summer and since then they had an episode in December and one in January. Finally, season one is over, I think. I did a search and learned that it had been renewed for a second season. Maybe that's why they held off on the last episodes of season one until they knew if they would have a second season or not.

Anyway, I watched the last episode night where I learned (spoiler alert) that April, the main character, is in remission with a 60% chance of the disease returning. See, with cancer there are no guarantees. It made me think.

If you have cancer, you analyze the statistics on recurrence and death until you are blue in the face. Then you discuss and dissect them with anyone you can. You tell yourself you are in the 'good' part of the percentages as in 'with a 70% fatality rate in the first five years'. You are clearly part of the 30% because you couldn't possibly be part of the 70%.

The only thing with cancer is that you know there are no guarantees. You can tell yourself anything you want but deep down you know the only thing that is certain is the 'uncertainty' of a cancer diagnosis.

Lung Cancer Doesnt Get Its Fair Share

Lung cancer affects half as many women as breast cancer does each year but kills twice as many women. And its five year survival rate is 16% or for Stage IV, 4%. To put it another way:

"An indiscriminate killer, lung cancer takes more lives annually than breast, prostate, colon and pancreatic cancers combined. The disease has not generally received the public attention or research dollars in proportion to its devastating lethality. Lung cancer receives just $1,442 in federal research funds per death, compared with $26,398 for breast cancer and $13,419 for prostate cancer according to an NIH study. Factor in private donations, and the funding gap becomes even more staggering."

Lung cancer is not the only one that is indiscriminate. All cancers are indiscriminate but its time that other cancers get the notice that go to the headline cancers - breast, pancreatic, and prostate. I call them headline cancers because they grab the headlines. But there are millions of Americans dealing with a lifetime in cancerland which is not the same as life without cancer.

November is lung cancer month. Did you even know that? You couldn't miss the pinkification of October..... Lung cancer, and other non-headline cancers, need their fair share of funding, research, and awareness.

Be Bold, Be Bald Day

October 17th is national be bold, be bald day (www.beboldbebald.org). I had never heard of it before this morning but its the 6th annual. I am not so sure how I feel about this.

If you are a supporter, you get to wear a lovely bald cap (which looks nothing like a bald head) to show your support of people who have lost their hair as a result of cancer treatment. Once you sign up you can order your kit of a bald cap and sign up sheets or you can order bulk quantities of bald caps for your team.

You can sign up your organization to be a beneficiary of the BBBB effort. Then you will receive about 75% of what was raised by your supporters.

I have decided I have two problems with this effort:

1. All the smiling people wearing ugly bald caps over long hair do not make me think of cancer patients. 
2. 25% of the amounts raised don't make it to you.

I have a friend of mine who shaved his head to show support for someone with cancer. That is what I call bald. But it still doesn't have that chemo pallor we all know and love. And its not worth 25% of your money to wear an ugly bald cap.

How ugly are these bald caps? this is a picture of actress Kathy Bates wearing one of these.


Now that I have written all this I guess I have decided I don't really like this much at all. I like the solidarity but that's about it.

Raising cancer awareness

One rap video at a time....





He's 19 and should be a UCLA freshman instead of sitting in a hospital room with a chemo pole. Between treatments he created a rap song to show the every day life of a cancer patient which he hopes JayZ will hear and help him raise awareness about cancer.

I can verify it sucks to be 19 and diagnosed with cancer. Go for it Thomas.

Thyroid Cancer

How the heck do I do this every year? We all know Pinktober is looming like a huge pink layer of smog over us all. But September is Thyroid Cancer Awareness Month.

It has been in my life since 1981 but we are not good friends. I am stuck on a daily pill forever. Sometimes there is that ice breaker question of  'what would you want with you if you were stuck on a deserted island?'. While I might want to say the entire set of Proust ("Á la recherche du temps perdu") in English to decipher and perhaps attain enlightenment, I would really need to say a 20 year supply for thyroid supplement - or enough until rescue.

I am tethered to a little bottle of pills as a result of my little frenemy. And I get blood tests and all sorts of extra doctor appointments. And the best part is it has been known to recur up to 40 years later.... So I will probably never be off the hook.

Thyroid cancer is one of the few cancers which is increasing in prevalence. While the average age of diagnosis is rather late, 50 or so, it also occurs relatively frequently in young women - teens through 20s.

And the best part is it leaves you with a lovely scar right across your neck - that looks like someone tried to someone tried to cut your  head off. Until it finally fades to a white line. But a scar is a scar and it never tans.

But check your neck - thyroid cancer and goiters are the reasons your doctor presses on your neck and says swallow during regular exams. You don't want my frenemy.

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:

• A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  
• A lump or thickening in the cheek that you can feel with your tongue
• Loss of feeling or numbness in any part of your mouth
• White or red patches on the gums, tongue or inside of mouth
• Difficulty chewing or swallowing food
• Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
• Swelling of the jaw causing dentures to fit poorly
• Change in voice

Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.

You can call me a wimp

Last night I got together with two friends - one of whom I haven't seen in over 30 years. We were laughing about the fact that when we last got together we were too young to drink in a bar legally. The other friend is one who I have kept in touch with pretty much all through the years. We both have RA but her's is much more under control than mine, or maybe my fibro and back pains make me more complicated.

We caught up on life and loves over the decades. My RA friend's husband is dealing with stage IV colon cancer and is in clinical trials because there is nothing much else left. Based on my other friend's reaction to that news, which was surprised, supportive, and dismayed, I was unsure about sharing all my health news. I said my health is horrible but I'm still here. I skipped the cancer parts.

Why was I hesitant? Because once burned, twice shy. I have been burned too many times but old friends who run from the word cancer. We already have plans to get together again so I'll wait and decide later.

But in the meantime, you can call me a wimp.

Some words of advice to those who don't want the world to know they have cancer

I started this post in mid-2009:

Over the years, I have collected my share of surgical scars - there were the ones that everyone could see and I didn't really care, like knee surgery, or the ones that were so old, like thyroid cancer, no one could see them.

Then breast cancer surgery made all sorts of fun scars. Like a giant port scar on my chest (which they cut into twice just to make sure it really shows) for insertion and removal. The one where they took out lymph nodes by my arm pit (that they also cut into twice so it really shows) once for sentinel node and once for axillary node to make sure there were no more cancer cooties and is visible with a tank top.

Then there is the lumpectomy scar, and the other lumpectomy scar, and the third lumpectomy scar which are usually covered at all times but receive radiation so they really show. Finally, there are the connect the dots on my abdomen from my hysterectomy and my four incisions for my gall bladder-ectomy.

In the midst of all the surgical fun and games, I stopped getting changed at the gym at those few intervals when I actually went. I didn't want everyone to see my scars. I was very careful not to let anyone see anything that might scream out 'SHE'S A CANCER PATIENT' so I made sure I remained clothed. Swimming in public is not an option really these days for similar reasons.

One night I had a brilliant idea and I said to my husband 'I'm going to get up tomorrow morning and go to the gym at 6 am'. Well this was a great idea at 8 pm but not at 6 am. Big surprise, it didn't happen. Then I got a brainstorm, why don't I leave work a little early and go to the gym on my way home before my hair cut. So I put together my bag of clothes and went off to work. I left work on time, didn't get stuck in traffic, and even got a decent parking space at the gym.

I went into the locker room to get changed, which was moderately full, and as I was half dressed, I remembered my connect the dots scar issues. I thought 'what if someone sees my scars????' so I resorted to the really mature 'get-dressed-as-fast-as-you-can-and-pretend-no-one-saw-a-thing'. I always believe in pretending things didn't happen and they don't matter. I know its not mature but it works for me.

-----------------------------------------------------------

Now its 2014, someone had a blog post recently on surgical scars and showing them.I found this draft post and have done some thinking:

• I am much less paranoid these days. I have decided that no one can tell if I am a cancer patient unless I tell them. 
• I am much more relaxed these days. I can actually talk about having cancer with total strangers.
• Finally, surgical scars are better thought of as badges of pride than of shame.

Now I get changed at the gym and even wear my lymphedema sleeve in public with out a care in the world. 

Time has allowed me to change how I feel. The old adage is true, time does heal all wounds... except sometimes that word 'all' should be changed to 'most'.

World Cancer Day

Today, February 4, is World Cancer Day. The target of the day is to Debunk the Myths surrounding cancer.

World Cancer day started a few years back. They presented signatures to the United Nations in 2011 with the goal by 2025 of:

There will be major reductions in premature deaths from cancer, and improvements in quality of life and cancer survival rates.

I like their way of thinking. They set up a list of targets and this year is to Debunk the Myths. You can go to their website and see more details on the myths and their other targets.

To show your support for this day, if you had cancer you are supposed to wear purple. Hmmm.... Isn't that labelling? I hate labels. I am not the S-word. But I want to show my support.

Today I am taking a family member to chemotherapy so will be hanging out in the oncology department. How much purple will be there?

My compromise is a purple patterned shirt and purple undergarments. Am I a weenie? I'm not sure. I just hate the labels.

I digress. Today is World Cancer Day.  Show your support by learning more about it and seeing what you can do to help.

Waiting for the end of Pinktober

At the beginning and end of September I asked all to take a pledge to avoid pinkification and wasting money on pink things that do not help cancer research. It is still not too late to take the pledge for 2013.

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

Today is the second to last day of Pinktober, formerly known as October. Did you research causes to ensure they were legitimate? Did you arbitrarily purchase pink items?

Its not too late. You have 36 hours or so to still make a difference without being pink. If you did help in pinkification, now is your chance to take a step back and reevaluate what you did so you will not repeat again next year.

You may think I am being redundant here but I do feel strongly about this. Ridiculous amounts of money are spent on cancer awareness causes, of which Pinktober contains the worst, that are unnecessary.

What is necessary is money for cancer research. I do not think anyone ever the age of 10 living in US, Canada, and Northern Europe who is not aware of cancer these days. We have all 'been there, got the t-shirt'. And cancer still has no cure, along with many other diseases such as Rheumatoid Arthritis, Cystic Fibrosis, diabetes, and more.

Skip the awareness, skip the t-shirt, and help with research.

Please take a moment to reflect on your contributions to pinkification this year and see how you could change your efforts next year to help with research instead of another t-shirt.

Is Pinktober less Pink this year?

I know I have seen a fair number of pinkified items - my mother was horrified to find her newspaper printed on pink paper earlier this month. There is an absolutely horrible and disrespectful pink ribbon Halloween costume - a clear example of pinkification. I have read many articles on local events for breast cancer. I have heard of a few buildings lit up in pink. I have been approached by fewer people to participate in pinkness.

But it seems like less pink than in the past.

Anyone else?

I sincerely hope that the peak of pinkification and pinkwashing has passed. The rise and fall of the Komen organization I am sure had an impact on it. The message of overdone awareness may be finally getting through.

I mean we have had a fair number of distractions this month that is supposed to be for breast cancer and liver cancer awareness thanks to all the idiots in Congress - both parties. (I do not usually comment on politics here but at this point all members of Congress are idiots for their insistence on 'my way or the highway politics'. That is the extent of my political statement today.) Also the roll out of the Affordable Healthcare Act has been a disaster due to the website issues. 

These may have sucked the headlines away from pinkification. I have also had a fair number of personal distractions on top of everything else.

I would be very glad to see the end of pinkification. So I hope I am not the only one to feel this way.

Bracing for pinkness

Today is September 30. Back at the beginning of September, I asked all of you to take a pledge against pinkification and focus on real needs. Here is the pledge again:

I (state your name [and not the Animal House version]) promise that during the month of Pinktober, formerly known as October, I will not arbitrarily purchase pink items or donate to pink causes with out first researching how much actually goes to breast cancer research or screening services. 

I will first research them using services such as Charity Navigator (www.charitynavigator.org) to ensure they are legitimate.

I also promise that I will not support pinkification efforts to paint things pink, light up buildings in pink, or other such activities.

Thank you.

Its been a month. Have you researched other causes? Have you rejected any pinkification efforts already?

I have been asked to be in a newspaper article (which they actually print on pink paper during the month of October) and declined. I have already been approached for donations because its breast cancer awareness season. October will be a blur of pink, with the internet and phones and mail full of requests to help with pinkification efforts. The media will also be full of rehashed breast cancer research from the past few years. This does nothing. It does not help.

We do not need awareness. We need research. And a cure would be really nice. I just learned this morning that another 36 year old woman, Jen Smith of LivingLegendary.org, died of metastatic breast cancer yesterday - that was too young.

We can skip the awareness. There are better things in October - Columbus Day/Canadian Thanksgiving and Halloween. (Haven't you seen the little candy bars everywhere?). Its also Liver Cancer awareness - which is a green ribbon. You can skip wearing pink for breast cancer awareness and wear green for liver cancer.

November brings us Lung Cancer awareness and the Great American Smoke Out as well as Pancreatic Cancer and Stomach Cancer months. It also has Veterans Day - and we have many veterans to thank and remember - as well as Thanksgiving.

So please take the pledge and donate to cancer research and not pinkification. Thank you.

Time for a change

Through the past forty years, there have been changes in the way we view and treat breast cancer. It started with the 'lets cut out as much as we possibly can'. Radical mastectomies were carried out regularly, permanently disfiguring patients - both emotionally and physically. And leaving them with life long health problems of lymphedema and more.

Gradually, times changed and focused more on detection with the advent of mammograms. My original cancer book printed about 1980, says that they were just beginning to recommend regular mammograms as screening for breast cancer. After this the Komen foundation began to promote early screening which some how devolved into the pink ribbons, pinkification, sisterhood and giant pink wave that overtakes the world every October.

The Komen foundation has managed to give themselves several black eyes in recent years which are proving their downfall. However their efforts, along with that of many other,  have greatly helped destigmatize the disease, allowing people to shout the word cancer instead of whisper it in corners.

But as Karuna Jagger, (www.twitter.com/karunajagger) Executive Director of Breast Cancer Action, points out, its time for a change from this pink world to one where we focus on what is really important:

"As the nation's attention focuses on breast cancer during Pinktober, let's stop selling women a false narrative about screening, and instead advocate for more effective treatments, less treatment when possible, and fewer breast cancer diagnoses in the first place. It's time we change the breast cancer narrative once again."

We do not need all the pink to focus on these efforts.

We knew this would happen

Not to make light of an other's misfortunes but I think that we knew this would happen. Komen (for the Cure) has clearly been on a downturn since the mishandling of the Planned Parenthood epic in 2012. One of their main fundraising efforts has been their three day walks. There used to be 14 around the country. Starting in 2014, there will be 7.

The Three Days are cancelled in Boston, Arizona, Cleveland, Chicago, Tampa, San Francisco, and Washington, DC. This will leave only Atlanta, Dallas/Ft Worth, Michigan, San Diego, Twin Cities, and Seattle.

And example of their recent numbers is here:

"On May 11, thousands of breast cancer survivors and their supporters gathered on the Mall in Washington, D.C., for the annual Susan G. Komen Global Race for the Cure, but attendance at the charity’s signature fund-raising event was down for a second consecutive year.

About 21,000 people registered for that race, down from 27,000 last year and nearly 40,000 in 2011. Fund-raising has also been down: The race generated $5 million in donations in 2011, according to Komen spokeswoman Andrea Rader, but generated $2 million last year."

What does this tell us? Large non profits are increasingly scrutinized by the American public on many levels - what they do with their money, what they support, and the amount paid to their executives.

If I was a leader at Komen I would clearly be taking steps to save the organization as they have clearly been forced to cut their fundraising activities in half. I hope they see what last year's mistake has cost them.

Cancer awareness

I received an email the other day reminding me about getting regular cancer screenings and awareness. I don't think I need much more awareness. I am plenty aware. And I get regular cancer screenings. And more than the average bear. I don't need any more awareness. I would prefer unawareness personally.

But with my  medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.

If you need any cancer awareness I'm happy to give some away.