Friday, March 30, 2012

Going for clean margins

Clean margins are the goal in cancer surgery. Clean margins does not mean there is no doodling on the margins of your book. Clean margins mean there is a distance between the edge of the incision and any signs of cancer. Often times they are not discovered until after surgery at the biopsy and require additional surgery. Which is no fun - who wants a second surgery? Not me, thank you.

So someone has discovered a way to solve this problem. But then, it has been discovered. When will it be put to use in my hospital so that if I require more surgeries I can benefit from it.

I like to hear about medical advances but I always wonder if/when I will ever benefit from it. Grrr.

Thursday, March 29, 2012

News of the day

Random news that piqued my interest this morning:
  1. Three Quebec mammography clinics missed 109 cases of breast cancer - primarily due to one radiologist who has since retired. I am glad I did not go there. But also this is just an example that errors can occur everywhere and if we are not happy with results or have questions, we should get a second opinion or ask our questions until we get the answers we need.
  2. A giant leap in personalized medicine occurred as two Boston area teams compiled a giant encyclopedia   "...that predict the vulnerability of hundreds of different subtypes of cancer to dozens of drugs. The massive catalogs, which were made freely available online Wednesday, are an important step toward the routine personalizing of cancer care, in which patients will receive treatments tailored to the specific genetic changes that influence a tumor’s response to drug regimens."

    This is sounds cool and sounds like lots of progress but its more than my tiny brain can comprehend. I'll just let someone else summarize it for me. If I could find the encyclopedia I might attempt to look at it.
  3. Its time for all of us to start growing wild tomatillos - which are a native weed - which has been discovered to contain medical properties.
    "So far, the researchers have demonstrated 14 compounds found in the plant can fight numerous cancers and tumors without any apparent side effects or toxicity—namely: melanomas, thyroid cancer, head and neck squamous cell cancer, breast cancer, glioblastoma brain tumors, and certain leukemias. Other studies suggest these same molecules may combat both esophageal cancers and pancreatic cancers." I'll ditch the flower garden and lawn and grow some weeds instead.
Now I am off to work for the day to ponder these latest advances.

Wednesday, March 28, 2012

Who owns that gene?

That depends on who you ask. Personally I find the idea that someone can own the patent on a gene which was created naturally in my body a bit creepy. Now the court is saying the same thing.  Here is a summary of what my tiny brain understands:
  • The US Patent office has been issuing patents on genes for about 30 years.
  • Myriad Genetics developed the BRCA 1 and 2 tests and patented the two genes.
  • Anyone who wanted to perform a BRCA test to test for the breast/ovarian cancer gene had to pay a fee to Myriad
  • People sued and a judge in 2010 invalidated the BRCA patents.
  • Myriad continued the fight and it got to the Supreme Court (even though they are very busy with that healthcare reform stuff) threw out the case on the grounds of another case which said the laws of nature are not patentable.
  • This not the final ruling as it returns to the district court for further ruling. So stay tuned...

Great, what I see here are a lot of lawyers getting rich off greedy companies (assisted by the Patent office) while patients, cancer research, personalized medicine, and genetic research. But I think the odds are in favor here that this will be throw out as they Supreme Court tossed it already. (Or at least I hope so because I believe patients should come first and corporate greed should come last.)

Tuesday, March 27, 2012

Secrets of the health care reform act

Of course there are secrets hidden in the health care act. There are 2700 pages of government 'gobble-de-gook' that I haven't had the pleasure of deciphering - because, frankly, I am lazy and that would mean I would have to work. However here are some of the secrets, courtesy of CNN (where would I be without CNN to quote?):

  1. As of 12/2014 drug, device and medical supply companies would need to annually report payments and items of value they give to doctors and teaching hospitals. This means your doctors would actually be giving you the right drug, not the one they are paid to give you. How's that for smart thinking?
  2. As of March 2010, working mothers got a more appropriate location for expressing breast milk - employers must give them a  place to do this and allow breaks to do this as well.What are they supposed to do - stand in the ladies room or hide under their desk?
  3. Every chain restaurant with more than 20 locations would need to provide calorie counts for all items - but no date is set for this. In some ways I hate this because it takes all the fun out of eating a cookie to find out it contains 300 calories. But on the other hand, it keeps me from cheating on my diet.
  4. Abstinence only sex education would receive matching federal funds. Too much teen pregnancy going on so I think this is good.
  5. Flexible spending account requirements get tighter. As of 2013, there will be an annual limit and they can no longer be used to buy OTC medications and vitamins. Of course, not everything is good.
  6. The tanning tax. If you must 'fake bake' your skin, you get taxed on it. 10% is the amount. This went into effect in 2010.
  7. Work wellness programs can be funded through grants for small businesses and companies are incentivized to have them. Hmmm.... Does this mean if you run on the company treadmill for 10 minutes you can get a candy bar from the vending machine?
  8. Free preventive care as of 2010. Well free to the patient but insurance companies must fully cover mammograms, physical exams, colonscopies, vaccinations, and more including genetic counseling for women with the BRCA gene. The idea is to find problems early before they get expensive. While it sounds like insurance companies are taking the hit here, they really aren't. It costs much less to remove a precancerous polyp than it does to treat stage IV cancer.
  9. Home visits for expectant parents. The idea is to reduce child abuse and neglect and promote the health of mothers and their children. This began in 2010. Taking care of moms and new babies can prevent millions of dollars in care down the road.
  10. This one is my favorite - health insurance policies which do not require a secret decoder ring to decipher. As of September 30, 2012 the plans must be concise and understandable and make it easier to compare plans.
So its not just about insurance for pre-existing conditions, life time caps, young adults on their parents insurance until 26, and requiring everyone to have insurance, it does include other little but important changes. I have to say I am sick of news on health care reform and can't wait for the Supreme Court ruling so everyone will just shut up about it. And I really hate the fact that the media things the average American can't handle news that isn't broken down in to top ten lists. But I found these interesting and can't wait to receive my first legible health insurance policy.

Monday, March 26, 2012

I put this in the self-inflicted category

The Komen Foundation is having problems meeting its fundraising goals at recent events. Why doesn't this surprise me?
  • They shot themselves in the foot with the Planned Parenthood flap and their inability to handle the bad press.
  • They shot themselves in the foot when their 990s (tax forms for non profits) showed the high salaries paid to executives and amounts that went to research vs. what goes to run events.
  • They shot themselves in the foot when key employees started leaving the organization - which had very little to do with the Planned Parenthood flap. Now their board chair is leaving allegedly at the request of his employer to distance himself from the organization.
  • And they completely 'opened mouth, inserted foot' with every effort to handle these issues.

Now their wallet and bank account is taking a hit. This is becoming the poster child for how not to run a non-profit.

A non-profit needs to be clear in how their funds are used, they need complete transparency on their finances, they need to stand behind what they say they do, and they should not succumb to political pressures. Not only that, they need to be very clear on all of the above. If a potential donor wants to know any of the above, it must be very easy to find the information. Any potential possibility of false pretenses will result in lack of donations. This is what has happened to Komen.

I happen to work for a local non-profit and handle fundraising, development, outreach, and marketing. I strive to be as clear as possible with what we do, what are our goals, and where our money goes. It is a very small organization so we do not have as complicated finances that Komen has but transparency is invaluable.

Sunday, March 25, 2012

The health care controversy

Next week the Supreme Court will tackle health care reform, or the Affordable Care Act, or Obamacare - or whatever you want to call it. Some people like it, some people hate it. I am relatively impartial. While I like some of the changes - no pre-existing condition exclusions, no more life time caps on benefits, children can remain on parent's health insurance for another three years, more well people scans, and other items. I am also not looking forward paying any more than I already am or having to wait longer for care.

But I have also taken a wait and see approach. I see no need to jump up and down and take a stance that 'it will not work' or 'it must happen the way it is written' because we don't really know how it will work. Already, there is insurance available for those with pre-existing conditions but only 50,000 people have signed up - which is much lower than what was expected.

I do believe the current situation has to change - the insurance companies should not make medical decisions for the patients and just because you get sick  your insurance company should not be able to cut off your benefits. That's like your car insurance company saying because you get in an accident, they can cut you off. Oh, that's right they do that too. Insurance companies should not rule the world.

I recently had a Facebook 'discussion' with someone who is against the proposed changes. She had been told by her child's doctor that it was wrong. She could quote from various right wing online sources that were against the ACA. But could she articulate more? No, quoting from others was about it.

While I welcome dissension and embrace my inner rebel, I believe I need to form my own opinions and don't need to use others' rants to express an opinion. While I cite articles, I use mainstream sources and don't refer to extremist opinions to explain my stance.

If you agree or disagree with anything, please state your own words and have a discussion with me. After more than 30 years with cancer and worrying about not having health insurance or being told I had a pre-existing condition, I welcome change that would allow me and others not to have to worry about life time caps or loss of insurance just because a whim of the industry.

Saturday, March 24, 2012

News flash - cancer treatment can cause long term side effects

Who knew? The poisons of chemotherapy, radiation, and surgery could have long term effects on a cancer person's body and health.

A growing population of cancer survivors faces an increased risk of radiation-related second malignancy and cardiovascular disease (CVD) for which little evidence-based clinical guidance has emerged, researchers found.

Gee whiz. I never would have thought what can cure me might kill me too. Any medical treatment you receive where either the nurses have to wear special gowns to handle the drugs before they are injected in your body or the technician has to leave the room you are stuck in during the zapping. No dangers there.

I had RAI treatment in 1981 where I was given radioactive iodine to dissolve the rest of my thyroid tissue. Now the standard is that you go into isolation for a few days so you don't contaminate others. Not me, I was out in the real world as radiation isotopes decayed inside me emitting my own little radiation waves.

I know people who have had chemo and then were diagnosed with leukemia or lymphoma. I know one person who was treated with radiation to the chest for Hodgkins and decades later died of breast cancer which she was told was a known long term side effect of her previous diagnosis.

Well we can worry about it all we want, along with the R-word, as we go from doctor to doctor hoping nothing new shows up.

Friday, March 23, 2012

The R-word

Its spring time and for us cancer people the R word is not 'refund' or 'rebate' or 'renew' or 'regrow'. It is 'recurrence'. That is the EVIL word. It is the word none of us want to hear.

I have a few friends who are coping with this nasty word now. It does not mean good things. That word coming from your oncologist's mouth yanks you back on the cancer roller coaster from hell.

The problem is that any little 'abnormality' after a cancer diagnosis causes doctors to think that way. "With your history, we need to be sure, blah, blah, blah." This does not help. If you are a normal person and you go to the doctor with a headache, they ask if you have had your eyes checked, any allergies, and then rule out a thousand other things before they get to 'brain tumor'. If you are a cancer person and go to the doctor for a headache, they start with have you had your eyes checked (because even with cancer you need to get your eyes checked and go to the dentist) and then go directly to 'brain tumor' which results in a billion tests and medical 'adventures'.

Then if any test results are inconclusive, either you are subjected to a billion more tests or they switch to 'watchful waiting' which causes endless nightmares until they decide whether they were right or wrong.

The R-word is every cancer person's nightmare. For those who are coping with it - either its possibility or the reality of it - life is not easy. One friend who is coping is doing the right thing - a mini vacation in the middle of all the tests and medical adventures. Why not? I hope I would do the same thing if faced with it.

I know at my second cancer diagnosis, I went straight to denial. Not me. The difference between a second cancer and a recurrence is that a second cancer is mostly likely to be early stage - most cancers are diagnosed early and if you have already had cancer, you get all kinds of 'extra' medical adventures just to ensure you have the most fun in life. A recurrence if it is regional is probably a stage III and if to other body parts is usually stage IV both of which are considered to be late stage cancers.

To those of you dealing with the R-word as part of your life, I say make plans for your life in 20 years.

Thursday, March 22, 2012

I only wrote a blog

You hear the stories about how people who get through cancer, or other life changing events, do something to give back - to give their life more value. I have a blog. This gentleman, on the other hand, has set an example for all of us.

I wrote a blog which started as my way of communicating about my wonderful cancer roller coaster. Now I hope it helps other people by showing their is life after cancer but allows me to continue to offer my opinion on all sorts of things. But I am an underachiever in comparison.

Mr. Huntsman has created a cancer institute and has donated more than one billion (that's right a 'b' not an 'm') to help others. He had has cancer four times - I am happy not to compete with that number - and therefore has a special insight into what its like to go through diagnosis and treatment. We should all try to be like him and help others as much as we can.

Wednesday, March 21, 2012

Improving the patient experience

The latest trend in medical care is focusing on the patient experience - everything from motivating doctors to provide better care to their patients to reimbursements tied to patient health and survey replies on the patient experience. The better the care, the higher the compensation. I think this is a very good idea - after all as the patients we are the most important part of the medical care system.

So some 'rocket scientists' have decided that they should improve the care level patients receive from nurses. I have always thought nurses do their best to care for the patients. They provide more direct care and TLC than any other medical professional. After decades of staff cuts for cost cutting reasons, nurses are asked to do more and more with fewer and fewer staff members to help them.

So the 'rocket scientists' have decided that the best way to improve the patient care is to provide scripts for nurses to should use in communicating with patients. I 'sure' that is the best way to improve patient care - give professionals the 'Disney' scripted version. Of course I am sure the nurses would never have come up with the proper words on their own. They are only professionals with lots of training. They could never think of the proper words on their own. I have my own ideas on how to improve patient care:
  1. Hire more nurses. All nurses I have seen, especially in in-patient situations, have way too many patients to handle them all properly. The most common complaint I have had is that I have had to wait for extended periods - hours - before nurses could get to me because they were overworked.
  2. Provide periodic training sessions to remind nurses of the new care standards.
  3. Hire more nurses. Did I already say that? Well its worth repeating.
I noticed that in the new focus of health care in Massachusetts where patients are required to have a primary care physician, more nurse practitioners and physician assistants are being hired to help fill this gap. Maybe this should extend to the in-patient scenario where nurse to patient ratios are stretched too thin? Hiring more nurses does increase costs but if the focus is on improving patient care and hospitals are compensated for this, then the costs should be less of a concern.

Tuesday, March 20, 2012

Those 'cancerversaries'

How important are those cancerversaries? To me not very much. I have never really celebrated one with a party or anything. I think I sort of mentally marked some of them - many of them I forgot completely. I do know some people who celebrate - maybe they have later stage cancers where another year is unexpected after their diagnosis. Its their choice.

I am not sure where the five year thing came from - its the standard in clinical trials - but it has now become our basis. 'The five year survival rates are...' They don't tell me anything more than reducing me to a number. I am not a survivor and I am not a number - both of which come to play in that single phrase. I am a person. I don't plan on celebrating my five years from breast cancer diagnosis this year any more than I plan on celebrating 32 years since thyroid cancer diagnosis. Why? They are numbers. They do not begin to describe my life.

At one point I had plans to celebrate 20 years and then 30 years since thyroid cancer but have never bothered. I don't think I ever considered myself a number in that respect.

Also, I think the five year thing is completely misleading. I think triple negative breast cancer (I had ER/PR+, Her2-)  is mostly likely to recur during the first 18-36 months after diagnosis. So what does that five year mark mean for a woman with triple negative? Five years isn't really the important number. Thyroid cancer has been known to recur 30-40 years out so what does five years mean there?

I guess everyone can make their own choices and my choice will not be to have a party.

Sunday, March 18, 2012

The costs of cancer

What are the costs of cancer? Or how do you enumerate them all? There are medical costs which can bankrupt you.There are physical ones which leave you scarred for life. There are emotional ones that test your sanity. There are social ones which cost you relationships. There are medical ones which can kill you.

Much has been said about health care reform and how it will could help people facing a cancer or other icky diagnosis, but there is more to it than that. Health care reform will help with the financial impact and reduce some of the stress but that doesn't relieve the costs of cancer.

What about the other costs? How do do we relieve the rest of them? These are other costs that need to be addressed as well. We have come along way in relieving some of them. Cancer is not the hushed whisper any more so there is less of the social strain but it has not stopped our 'friends' from ditching us when the hear the word. Surgery has progressed so that scars are less disfiguring but they are still there. The emotional roller coaster is addressed by your medical team but in the middle of the night the little voice still says 'what if?'

We still have a long way to go.

Saturday, March 17, 2012


There is now a cadmium link to breast cancer. I am not sure I remember eating cadmium. I know there is a cadmium in some paints - remember 'Cadmium Red' crayons? Cadmium is in lipsticks and other paints. Or maybe it was in lipsticks and paints that you aren't supposed get from China and other overseas factories. I know there are all sorts of heavy metals including cadmium in polluted ground from old factories. I don't remember having much intake of cadmium in my life.

I don't think that they, the proverbial they again, really know that much after all. Its another guess.... Sooner or later they'll get it right. I hope.

Friday, March 16, 2012

They did it again

Once again, they changed their mind. This is the proverbial 'them' who create these vast conspiracies to oust political candidates, were the ones who really broke the window, or the the ones who change medical standards. Yes, more medical standards are changed in a vast plot to confuse the patients. Now we do not need annual pap smears, one every three to five years, depending on age and who you listen to.

In the 1930's they started suggesting annual pap smears as cervical cancer was the number one killer of women, more than breast cancer and lung cancer. Now only 4,000 women are died of cervical cancer and most had never been screened for cervical cancer or it was more than ten years prior.

I am confused. If women who aren't screened are the ones who are dying of cervical cancer and the women who are screened are not dying of it, why don't we need to be screened. Doesn't this put us all in the category of being unscreened or potentially dying of cervical cancer?

The suggestion is that if a woman has normal pap smears for three years can go to once every three years as it is a slow growing cancer. I'm all for less testing but don't we all need some testing? I don't know, I am confused. I'll have to think about this one for a bit.

Thursday, March 15, 2012

Just don't pay attention to the cost

Yup, that's it. Don't look at the price tags. Isn't that a good way to go broke? This is not logic to me at all. And I hope its not to anyone else but apparently its a reality in evaluating health insurance costs.

So I was reading this article this morning which compares and cynic's version of how health care costs will out strip the average American's total income vs the version of how managed care is reining in costs and that is not true. Fine everyone can agree to disagree and life goes on.

Then I got down to the end of the article and figured out how we got into this mess in the first place:

"A wild card in all this is the Affordable Care Act, often called “Obamacare.” Critics say expanding health insurance to cover another 30 million people will send costs through the roof. But ACA supporters point to provisions meant to slow or reverse the growth in spending - especially an emphasis on preventive care, which is supposed to reduce the need for expensive hospitalizations and emergency room visits.

DeVoe says the ACA is a “great first step, but it’s not enough to get us where we need to go in terms of sustainability.”

Co-author Dr. Richard Young, who runs the country’s largest family practice training program, at John Peter Smith Hospital in Fort Worth, Texas, points out that the new federal “comparative effectiveness” program - meant to compare the benefits of different treatments - is explicitly forbidden from considering cost, just as Medicare is forbidden from denying any “medically necessary” treatment, no matter how high the cost, or how small the medical benefit.

Young put it bluntly in an interview: “Until we’re willing to say 'no' to somebody, anybody, there is nothing to stop this inflationary pressure.”"

Yes I believe in the value of the human life but you can't disregard the cost factor in evaluating a treatment protocol. This creates no back pressure on the drug and medical device manufacturers to control their costs. Hello! Wake up and read the damn price tags.

Wednesday, March 14, 2012

The forgotten population

Are young adults with cancer really the forgotten population? That's what the American Cancer Society tells us. They are also the ones who labeled us all 'survivors' which is another term I am not too fond of. They don't tell us why they are forgotten but they are labeled.

Young adults are diagnosed with cancer at much higher rates than pediatric cancers and have much lower survival rates. Its only in the last ten years that attention has been paid to their specific needs. I can understand both of these issues.

As children we are taken to the doctor by our parents and have regular well being check ups. Once we graduate high school and are out on our own, we aren't as motivated to go to the doctor as we are usually relatively healthy  and don't feel the need for medical attention. Our mothers aren't making us our doctor appointments and taking us there. Besides they might cut into our social lives. Also, doctors are less likely to expect cancer in a young adult than in an older one because statistics tell us they aren't as likely to get cancer than older populations. And unexplained aches and pains can often be attributed to an active lifestyle.

Cancer was always for old people so support systems were not created for the younger adults who might be in need of them as well. Children with pediatric cancer live with their parents who provide a built in support system. As a young adult, age 19, at my first cancer diagnosis, support groups were for old people. No one talked about long term issues. Old people talked about, well, old people stuff - like their grandchildren or their arthritis. At 19, I wasn't interested in either topic.

Young adults have other issues - like dating, fertility, long term side effects, financial challenges - working a lower paying, entry level job and paying medical bills if they are lucky enough to have health insurance. Also, the big question - what is my life going to be like now that I have cancer? Doctors are used to talking to older people about these issues.

"People are really trying to establish their identities, their sense of themselves, their ideas about the world, their careers, families, intimate relationships. And those things are all going on at the same time as a young adult has cancer," said clinical psychologist Karen Fasciano, who runs the young adult program.

That can bring financial challenges and concerns about long-term side effects from treatment.

I personally know people who had cancer as young adults and then died as the result of long term side effects from treatment. This is a real fear. When the FDA approves a course of treatment, they look at the five year health of the people who received the treatment, but what about the thirty year health? Those studies don't exist. Just call us the guinea pigs

The young adults with a cancer diagnosis should not be forgotten. They are gaining their voice and making their presence known with organizations like, also known as Stupid Cancer, or the Young Adult Cancer Conference held annually in Boston and taking place March 24 this year. Let's not forget the young adults with cancer. I was once a young adult with cancer and I can say we are people too.

Tuesday, March 13, 2012

What to do with all my time?

I have finally reached a point in my 'new normal' life after cancer number two where I seem to have gaps in my schedule. I was trying to pin point what happened and I decided it must be because I have been going to the doctor less and currently have no ailment which requires PT. In January, I had one appointment at the beginning of the month and then another at the very end of the month. In February I had a couple of medical adventures and then a week with three or four. Through some schedule juggling, I had two appointments last week and don't have another until the end of the month. I think I have two on my calendar for April. In May I have two days with medical adventures planned.

Combine this with a slackening in my work schedule for one job where now I only need to go there two days a week instead of the three I had been going in for the last six months, I have gaps in my schedule. What about the rest of my time? Maybe I need to start having a life again. I could work more, um, doubtful. House cleaning - um, no. I could work on my knitting more. I could garden and go for walks more when the weather warms up. Yesterday I worked from home, went for a walk with a friend (where we ran into two adult coyotes in a local park), and had time to attempt to make homemade pasta. (Note to self: next time make sure you have enough flour before starting so you don't have to substitute coarse ground whole wheat.)

Today I get to go to the gym, work from home, and go to a seminar this afternoon. Then I might even be able to work in the garden and clean dead winter stuff out for a bit.

I haven't had this much time on my hands in years. Before cancer number two, I was working full time and didn't have as much time. Now I work 30 hours/week and, with fewer doctor appointments, I have time to do the things I enjoy with out running from one thing to the next.

(And the advice I received on what to do when you see a coyote - stop, look at the camera, say 'beep, beep!' and dash off.)

Monday, March 12, 2012

All those cancer fundraisers

How many of those cancer fundraisers have you been to? This year? I mean the ones where someone is raising money to pay for someone's medical bills, or the ones where someone is raising money to participate in a cancer run/walk/ride. Many organizations have these events to raise money and require all participants to raise a substantial amount - often a few thousand dollars - which leads the participants to come up with creative ways to come up with the amount. The organizations often require participants to provide a credit card which they will charge 30 days after the event for any amount not raised.

People do these for a variety of reasons - maybe they have had cancer or maybe they know someone who has had cancer. I have been to fundraising dinners, lobster/clam bakes, where I work we have a costumed bowling night each year and many more. I send checks, I donate on line, I help how I can.

This weekend I went to a different one - a women's hockey tournament. There are two local women who started this to raise money to participate in a breast cancer walk. They started out with a few teams on a Saturday afternoon. This year, their fifth, they had a Friday night family fun tournament where eight co-ed teams of family members competed in four games. On Saturday they had eight more games with 16 teams of women hockey players.

In addition to having hockey games, they have raffles to raise additional funds. And they don't keep all the money for their walk donation, they donate a substantial amount to several other community organizations - a cancer support group organization (where I work), a center for bereaved children, scholarships for local high school students who lost parents to cancer, and the Jimmy Fund. I have no idea what they raised this year, but last year they raised $17,000.

This is an event which is all about altruistic efforts to help others. The people who run this should be lauded for their efforts. There is too much in this world where people do things for themselves but making an effort not only to help a cause but to help other organizations as well. The world would be a nicer place with more people making this kind of effort to help others.

Sunday, March 11, 2012

Of mice and men... and slackers

We bought our house and moved in 7 years ago, in late February 2005. The house had been empty since the previous June when the older woman who lived here, moved to assisted living. She had lived here alone for about five years after her husband passed away. She may have lived here without other people but she was not the only resident.

We had a house inspection and a pest inspection. We were told we had mice and they found one dead ant. The house came with cans of ant killer out on the porch. That should have been a sign. We have ants every summer. Very aggravating.

However we also have mice. The pest inspector told me it would cost $400 to demouse the house. I said we would try the cat first. We had no idea if he would do anything about a mouse but we decided we would let him have first dibs. In the first two weeks of moving in, one night he deposited a battered mouse on the bed as we slept. I pulled the blankets over my head and my husband disposed of the remains. (My husband asked what I would have done if he wasn't there and I said I would have slept in the other room.) We thought we had a mouse-solution. He pulled his weight and earned his kitty treats for his mouse deterrent efforts for several years.

We still have mice every year. The cat is now 17. He has had a variety of ailments which include loss of some mobility in his back legs - he can no longer leap up on the kitchen counter (which is a good thing) but he also is not as fast as he used to be. He also has lost most of his sense of smell, vision, and hearing. He doesn't care about the mice. We call him the slacker.

This week I noticed little surprises in the silverware drawer. So I washed it all, cleaned out the drawer, informed my husband. Then the next day I found more surprises in the silverware drawer. This time my husband washed all the silverware, emptied the two other drawers and put a trap in one. Yesterday morning we had a present in the trap. I thought that was it. But my husband had to put out the traps one more time. He did not tell me he put one next to the pots and pans in the cabinet. I found it when I went to put the pots and pans away this morning. It was not empty. I said 'eek' and went back to bed until he rectified the situation. (I really did say eek.)

What did the slacker kitty do when I left him in the kitchen with one of the bottom cabinets open with a mouse in it? Nothing. No treats for him.

This is a picture of slacker kitty doing what he does best these days. The black and white cat on the top is the cat I had as a teenager who lived to be 24. And the one who caught mice and all sorts of other free range, fresh meat to supplement her diet.

Saturday, March 10, 2012

More on health care reform

When the health care reform law was passed in 2010 (was it really two years ago?), nearly half of Americans were against it. That has changed to 32% are against it. In those two years, I have heard many stories of people who were against it and then found they were finally eligible for health insurance with the new laws. Or I know people who due to a cancer diagnosis had a pre-existing condition and could not find insurance until this new law went into effect.  There are still people who appreciate the benefits of the law for themselves but still do not think its good for the country.

Seniors have the strongest opposition as they are concerned that Medicare cuts were used to finance cover for younger, unhealthy people. Okay, I have a problem with this one. Medicare is a government benefit - the key word is BENEFIT. I know its not perfect and doesn't cover everything. If it did, that would be socialized medicine as is common in European nations. And that's one of the big concerns a lot of opponents have - that the new health care is socialized medicine. So let me get this straight, you want the benefits of socialized medicine but don't want socialized medicine?

Everyone is entitled to their own opinion (and my blog is clearly full of my opinions) but sometimes I don't understand other people's brains. Not that I understand my brain always either. My opinion on this is it happened, the Supreme Court is going to make a decision or three about it, and you can't undo it. The Supreme Court can say its unconstitutional and if they do, how are we going to take away insurance from all those people who now have it and couldn't have it before? 'I'm sorry ma'am, we are going to have to discontinue your chemotherapy as you no longer have insurance.'

Friday, March 9, 2012

We all need another math class

We need a math class that explains the importance of statistics - the fact that there is more to statistics than just the number. We always need to look at both sides of the equation.

"What are the harms of this screening test? What are the potential benefits? If the patient gets an answer of increased five-year survival, that's an indication that their doctor doesn't know what they are talking about," Brawley said.

Cancer screenings are lauded as being the most important thing we can do to increase survival rates. Yes they help us find cancers earlier, before they become symptomatic. This is important and we should not skip screenings.

But, and there is always a big fat but(t), the survival rates are not the important numbers. The death rates are more important:

"Doctors were three times more likely to recommend a test that increased the (irrelevant) five-year survival rates from 68 percent to 99 percent than to recommend a test that slashed the much more important death rate from 2 in 1,000 people to 1.6 in 1,000."

Yes this is a tad bit confusing and I had to read the same article three times to figure out what they meant, and I took statistics (but I do have chemo brain so maybe it has countered my education).

"The reason is that screening automatically increases survival rates, because finding a tumor early means people live longer with their cancer diagnosis than if they had waited until they had symptoms to see a doctor -- regardless of whether or not anything is done to treat them. 

In some cases, such as slow-growing prostate cancers, the tumor might never have bothered them in the first place. That means screening, and the further tests and treatments that might follow, would have led to costs and potential side effects without any benefit to the patient -- a phenomenon called overdiagnosis.

"For helping people understand if screening works, survival rates are misleading," said Dr. Steven Woloshin, of Dartmouth Medical School in Hanover, New Hampshire, who worked on the new survey.

He told Reuters Health that death rates gleaned from clinical trials are the only reliable way to judge if a screening test is effective. But organizations that promote screening, such as the breast cancer charity Susan G. Komen for the Cure, tend to prefer survival rates, which sound more impressive."

So we don't want the survival rates, we need to understand the bigger picture - would this cancer ever have been a problem for me? Or would it have taken 30 years to get to be problematic and that is well beyond my life expectancy? Cancer rates increase as people age, so I can see this being important for an older adult. Would it have been a problem for them ever? And the potential side effects from cancer treatment, can cause other cancers and lifelong medical problems.

For now I'll keep with my screenings but will also remember to take the findings with a large grain of salt.

Thursday, March 8, 2012

Wrong pills at the pharmacy

CVS has been on the  news recently for dispensing the wrong medication at a a pharmacy in New Jersey. And not just to one person but to fifteen people instead of fluoride pills. That's a big oops! I mean a really big oops. Imagine if it was something potentially toxic to children. A medication taken at the wrong dose could be fatal.

I once received the wrong prescription. I was given the wrong dose of synthroid. I noticed it when I got home and took it back to the pharmacy, also a CVS. They were very apologetic but I did lose my confidence with them. I then switched pharmacies. But I also took up the  habit of checking my pills as soon as I got home from the pharmacy. Did they look like the picture on the side of the bottle? Did they look like my last prescription?

I have noticed pharmacies have more checks now. I often see a row of bottles lined up with their paperwork to be double checked on the pharmacy back counter. I know pharmacies are better about informing customers about changes in manufacturers and potential differences in medications from the last prescription pick up.

So how did this pharmacy manage to fill fifteen prescriptions wrong? Was someone asleep on the job? Maybe the store should just close that pharmacy as I am sure they have lost their customers' confidence. Me? I'll just keep double checking my pills.

Wednesday, March 7, 2012


Yesterday as I was driving home from work (early of course because my evil cold is not yet gone) and listening to the radio at the same time (does that count as distracted driving as I was doing two things at once?), there was a public service announcement that came on for lung cancer in women. It gave a few statistics:
  • There will be approximately 226,000 cases of lung cancer and 229,000 cases of breast cancer diagnosed in the US this year.
  • There will be approximately 160,000 deaths from lung cancer and 39,000 deaths from breast cancer in the US this year.
  • Nearly twice as many women will die from lung cancer than will die from breast cancer.
  • There are no ribbon walks, runs, awareness, yogurt lids, hats, and all that for lung cancer.
It was a very poignant PSA and I wish I had paid more attention to the beginning. It did grab my attention as it made some very strong points. We have plenty of breast cancer awareness out there. We don't need any more. We need
  • Awareness of other types of cancer
  • Research for a cure for all types of cancer
  • Fewer pink ribbons
I think when we get an 'icky' diagnosis, we tend to focus on our ailment and not on any others. I know where my focus is: breast cancer and thyroid cancer. But I am very familiar with many other ailments - a friend's husband has stage IV colon cancer, a high school friend has MS, my mother has rheumatoid, and the list goes on and on. But I know I focus on myself and my health issues. I do need to take a step back and think of other ailments.

I live in the little microcosm of the pink breast cancer world which is populated by women with their pink ribbons and strong sense of humor. My little world also includes a growing community of thyroid cancer people which is a cancer with one of the fastest growing incidence rates. I was lucky both these cancers have relatively good survival rates. Lung cancer is one which does not. We tend to forget the statistics that others face. That is the awareness we really need.

Tuesday, March 6, 2012

A social obligation

Do hospitals have a social obligation to help more patients? This is an interesting concept. Hospitals have '“a social obligation to provide access to care,’’ said Dr. Timothy Ferris of Partners HealthCare, the parent organization of Mass. General and the Brigham.'

In the future doctors will be compensated on the care of the patient and given a budget per patient. If they have a larger patient pool, they create more wiggle room to allow for sicker patients. Patients will also need to have a primary care doctor. But there has been a long term shortage of primary care physicians and existing doctors are very prone to be overworked. It can be impossible to find a doctor accepting new patients. This is a nationwide problem but here in Massachusetts a few hospitals are starting to address the issue.

First of all, they are hiring more nurse practitioners and physician assistants to create teams so a patient can be seen by someone in the group. The doctors do less of the well baby, blood pressure follow ups, and other minor issues and can focus on the sicker patients or more complicated visits. Next, doctors are opening up their practices to allow for new patients but are evaluated not just on the number of patients they have but also on how sick they are. A doctor who has many patients with multiple ailments is credited for that.

If they do accept more patients, they will be paid more by the hospital. The "... hospitals are tying about 10 percent of doctors’ salaries this year to the size of their practice and the complexity of their patients’ illnesses." I think this is a good idea as long as the hospitals support them and follow through with their plans.

I think that doctors have felt overworked and would do one of the few things they could do to prevent more overwork by closing their practice to new patients. That makes sense but then it helped create the shortage of primary care physicians as there were fewer and fewer accepting new patients. There had been a lot of discussion on how to fix this shortage but now I think this is a plan which could work.

Monday, March 5, 2012

They have something backwards

If health insurance companies have increasing profits, how do you think they should react? Should they reduce premiums or at least reduce the premium increase, or should they give their executives big pay increases? I think most people will vote for the first option and the only people who would vote for giving the big pay increases would be the executives who receive them - and probably approve them as well.

This announcement came out last week: 'Capitalizing on fewer people seeking medical care and submitting claims, the state’s four biggest commercial health insurers posted sharply higher earnings for 2011 while their executives collected more pay, according to reports released yesterday.'

'“We’re trying to maintain the affordability agenda,’’ said Allen P. Maltz, chief financial officer of Blue Cross, who cited the Boston-based insurer’s 2011 operating margin - the percentage of money it makes from its revenue - of 0.7 percent. “We’re doing our best to return the good results to our customers and not see them drop to the bottom line.’’'

Now that's a lot of hooey.

'But a consumer advocate said the more favorable trend in health care costs should be resulting in lower premiums for employers and individuals, not just less burdensome increases.

“Premiums are still increasing, and they’re already too high,’’ said Deirdre Cummings, legislative director for the Massachusetts Public Interest Research Group. “This is the same dance insurers have been doing for some time, and this is what consumers are frustrated by. Insurers are reaping the benefits that should be going to consumers.’’'

Now there's something I agree with - we, the patients, are all frustrated.

After reading that article I then read one on moral decision making where the concern is really: 'It doesn’t just matter what people do but why they do it and what’s going on in their heads when they do it.' It also talks about the differences between normal people making decisions and their feelings about them as compared to psychopaths who are less concerned with the outcome and how it affects others.

Psychopaths are highly forgiving of accidents. Ordinary people find it really difficult to forgive accidents in some cases, because you can’t deny the fact that harm was caused. If someone sent you a computer virus and it messed up your computer, even though you know they did it completely by accident, you still have a really hard time forgiving them, because of this gut emotional response. Psychopaths have a blunted emotional response to the pain and suffering of victims even of accidents. That results in them being especially lenient in these cases.

This may explain why we are so unforgiving of those who do us wrong - meaning insurance company executives and the former friend who sent us a computer virus. As we struggle to pay our ever increasing health insurance premiums and balancing between food, mortgage, and premiums, the executives are making the big bucks and taking month-long tropical vacations. Even if the amount is miniscule - $500,000 pay increase to an executive might only result in $0.25 savings per premium payer but all those little things add up.

I think they have something backwards. They are not making moral decisions in these pay increases. They are taking the looking after  1 a little too far.

Sunday, March 4, 2012

I am undecided

I am undecided today. While I wish there was a cure for cancer (wouldn't that be nice?) I also wish there was a cure for the common cold. I am in day 5 of an evil cold. I have been doing all the right things. I first felt bad on Wednesday and was in my pajamas at 5pm,  in bed by 7, with the light out by 8. Thursday I stayed up slightly later. Friday even a little later. Yesterday I decided to pretend I was healthy and made it through 30 minutes at the gym and a trip to Costco. Today I woke up at 130am all congested, and no I did not get back to sleep. (I may slip into crabby mode a little later as a result.) In December I had another evil cold for 16 days that interfered with all my holiday preparations. I am getting a little fed up with this health business interfering with my desires to have a normal life.

Why can't there be a cure for both the common cold and cancer?? That would be the perfect world. Actually there are many medical ailments out there that could use a cure. And, no, there is not an evil conspiracy by the government, aliens, giant corporations or anyone else to make money off the rest of us while hiding the true cures for all ailments. Nor will you be healed by clicking on a link or sending $100 to some 'dude' somewhere  who has discovered the cure for whatever ails you - and you know this because he sent you an email where your name was only slightly misspelled.

Maybe what we all need to tide us over until the cures are found is a reverse voodoo doll where we can stick pins in it and relieve our symptoms. I don't know I'm clutching at straws here or having a pipe dream or whatever, but frankly I am sick of being the patient patient who goes from doctor appointment to doctor appointment. I am really just sick of being sick.

Saturday, March 3, 2012

That Supreme Court Case Explained

Or its a good thing I am not a lawyer... I find this very complicated. You know that Supreme Court case where they are going to hear six whole hours of arguments on the new health care law and then make a ground breaking decision. If you read the article it is a brief summary of something that is very complicated and citing laws going back over 130 years and deciding if it is a tax or not.  The two contended issues are mandating Americans to purchase health insurance and opening Medicaid to more people.

The Supreme Court gets to decide:
  • If this is a tax and if it is a tax it can't be disputed until after it has been in effect so the whole thing would be put off until 2014 or later.
  • Then if it is not a tax, then is it legal for Congress to require people to pay for insurance or pay a penalty and it might be an intrusion on individual liberty.
  • Next if it is unconstitutional can this requirement be split from the rest of the whole health care reform act. 
  • Finally they get to decide if the Medicaid expansion is unconstitutional or not.

I find it pretty amazing that this can be settled after only six hours of arguments and then the Supreme Court justices get to go think, talk over coffee, play basketball, or whatever it is they do and a decision will be announced and life will go on. Until another big issue is brought to the Supreme Court.

I once visited the Supreme Court. I worked for a legal non profit which was part of ACLEA, a legal education organization. They had their annual conference in Washington DC and we got a special tour by someone important at the Supreme Court, but not by a justice. I learned all sorts of fun things about the Supreme Court.
  • They didn't have a court house until the 1930s. They bounced around different places in Washington DC.
  • The newest member of the Supreme Court gets to be the secretary and take notes for the rest of them. If you think about it - it can be 20 years or more between each new justice and that's a lot of note taking. (So next time one is sworn in, listen for a big sigh of relief from Washington.)
  • There is a higher court that the Supreme Court. There is a basketball court upstairs. (See wikipedia for proof I'm not making this up and check the notes on the fifth floor.)
But I digress. This is a big case, which is why it gets six hours instead of a lot less, so we should all pay attention to its outcome.

Friday, March 2, 2012

What is this new normal business?

You get cancer, have all sorts of fun medical adventures, and then are supposed to reach your new 'normal'. Isn't that some sort of oxymoron? I mean normal is defined as:
Conforming to a standard; usual, typical, or expected.
The usual, average, or typical state or condition.
So if you were normal before (not that any of us are really normal), you are supposed to become normal again but a different kind of normal that is now your new normal. Does this mean I have to consider myself abnormal before? How many times do you get to have a new normal? Am I now in my third normal since I had two cancer diagnoses?

Or is this a lot of hooey designed to make us feel better? Life is full of life changes - everything from moving, changing jobs, getting married, having children, icky (for the lack of a better word) medical diagnoses - that we change and cope. We are constantly evolving and adapting to the changes in our lives. Darwinism lives as we adapt to the bumps in the road of life. So where is this 'normal' they (and that would be the mysterious them) tell us we should have? Are we supposed to pick a point in our lives and say 'I was normal then'?

These life changing events are just what that says 'life changing' you can't go back and undo them. 9/11 changed the country and can never be undone just as cancer changes individuals. Is the goal of finding a new normal unattainable? When do you know you have reached your new normal? Is there a little sign in the road of life? I say skip this normal business and focus on adapting through changes.

Thursday, March 1, 2012

Allow me a tiny bit of gloating here

I've been saying it all along and now I have proof. I claim chemo brain and plan on claiming it for the rest of my life. Now there is a study (because of course we needed another study) that chemo brain can last for 20 years. Of course they are saying well it could be that earlier chemotherapy regimens caused more damage than newer ones and that maybe hormonal treatments might also contribute to chemobrain. But I don't care. I get to gloat a tiny bit.

But chemo brain is nothing to laugh about. Not remembering words, using the wrong words, and more are little aggravations but when they happen all the time, they can interfere with your quality of life.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...