Humor and cancer

Cancer must be treated with a sense of humor (and a large touch of sarcasm). There is simply no other way. And if you lose your sense of humor in life, no matter what your ailments, you are basically screwed. So keep laughing and carry on. In my continual search for humor in the dark cancer world, I am always looking for the funny stuff.

I know Lorri who lost a leg to cancer and does a stand up routine about the shark.... Because its funnier than cancer.

I know lots of women with breast cancer who have a group on Facebook called 'Humor is the best medicine' and are always looking for the bright side of things.

This morning a Google alert brought me a link to a Huffington Post Blog about a new cartoonist, Kate Matthews, who has just published "The Little Pink Book of (Mostly) Cancer Cartoons (In Color)!". So of course I had to do some research (even though its early in the day) and found some more info on her, including the fact that she is working on a second book.

Here are some of my first favorites. I am sure I will find more...

If you aren't laughing or at least smiling, you might need to think about therapy.

Exercise and me

As an adult, I have been good at exercise. When I was a child, I was a dedicated athlete and ice skated daily before school, after school, on weekends, in skating shows, and basically a lot. Then I discovered being a teenager is more fun than spending your life at a skating rink and I was less of an athlete but generally active.

Eventually I discovered the benefit of a daily walk and walked my way through cancer, multiple surgeries (benign and malignant), and all sorts of fun. When I turned 40 37 for the fourth time, I joined a gym. Then my back started to hurt and nearly a decade later, I joined a gym for decrepit people. They are familiar with decrepit people and health issues. In fact yesterday when I was there, there were two people on cardio machines while on oxygen.

As part of my expensive (but worth every penny) gym membership, I get a three month evaluation free of charge. Yesterday we talked about how I can exercise with RA and fibro to my best benefit. We went from the 'lets do lots of things to keep in as best shape as we can' to 'lets do a few things to preserve balance, flexibility, and strength without injury or causing more pain'.

Now my work out consists of 45-50 minutes of cardio instead of 40 and maybe 10 exercises at lower weights for 1 set of 25 reps instead of 20 exercises at medium weights for 2 sets of 15 reps.

I tried it yesterday. Last night I was hobbling around. Today I am still hobbling but haven't decided if it is caused by my workout yesterday. Today I am not exercising unless going to the grocery store counts. Pushing around a big grocery card can cause pain. I just won't buy a lot of heavy things.


I will get exercise again tomorrow I think. I have to skip a day between work outs or I end up in bed for a few days. Call me wimpy but call me alive.

Coping, cooperating, and crankiness

I have had enough of serious blog posts on financial stuff and now am back to my normal (whatever that may be) level of zaniness in the crazy world of my health.

Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.

That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.

Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.

That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay.  I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.

Then I had an allergic reaction to the damn pain patches. When I took off the patch, I had a perfect rectangle of rash which lined up exactly with the patch's adhesive. I called my doctors office again and asked them what were my options and was told to either try going with out the patches (which doesn't work unless I want to live on pain pills) or putting cortisone cream on my skin ahead of time to prevent the reaction.

I waited for the damn rash to go away and tried again with the cortisone lotion. So far its working. Then another prescription showed up in the mail with its paltry $95 co-pay for one month of patches. And a note that said state law prevents them from sending more than 30 days at a time. I called the pharmacy again and was told it was by law but they weren't sure if why I had received 90 day supply of the 5mcg patches. I called my doctor's office again and asked for the 5mcg dose in a 90 day supply. Then I received another email saying a new prescription had been processed and will be sent to me. All I know is that it will have a $95 co-pay (that would be #3 this month) but I hope its for 3 months of the right patches that won't give me a rash.

In the meantime, back at the ranch so to speak, I  have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.

All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.

The Cost of Cancer Care, Part 4 - Waste

I am continuing my series on the costs of cancer I wanted to write about medical waste. But let's back up a minute, why am I pretending I am scholarly and writing about these 'big' topics in my little tiny blog? Because I think they are important. The medical costs a cancer patient incurs are amazingly high compared to other ailments - particularly in the first year after diagnosis and the last year of their life.

Cancer is becoming more treatable but is also becoming more expensive at alarming rates. The idea that a single chemotherapy infusion can cost over $10,000 is crazy. And unfortunately it is common place. Then if you take the infusion style chemo out of the hospital it becomes a pill that is covered by the pharmacy benefit which means it can costs hundreds of dollars per daily pill. So it may be physically easier on the patient to take a pill instead of receiving an infusion but is much more damaging on their wallet.

But I digress. Today I am writing about the broader spectrum of all medical costs. When I think of medical waste, I think of these big sterilized packages which are used to protect an IV kit and what isn't used is dumped in the trash. All those individually sterilized and sealed items where wrappers larger than the tool are thrown in the trash. By health standards, if a package is unsealed, anything that is not used is no longer sterile and goes in the trash. There are lots of single use items which make their way to the incinerators and landfills.

Unfortunately medical waste is also defined as a much larger problem. Medical waste often happens when there is a patchwork of care.

"Manhattan in New York City is a good example. Because healthcare utilization there is among the nation’s highest, Manhattan is seen as wasteful and inefficient. But it is a patch-quilt of wealth and poverty. Utilization in the low-income Bowery is double the rate of the affluent Upper East Side and Upper West Side, and utilization in Harlem, the poorest area, is more than triple (unpublished data). Without either, Manhattan’s utilization is among the lowest in the nation, lower even than Grand Junction, Colorado, whose healthcare system was held out by President Obama as a model for the nation. But like Grand Junction, the Upper East Side and Upper West Side of Manhattan have few African Americans and no poverty ghettos.

How much does the extra care in poor neighborhoods add to overall utilization costs within a region? The best estimate is 20% to 25%.[17] Yet, tragically, this fact is ignored—indeed, denied. For example, Dartmouth researchers mock the fact that “some physicians believe their hospitals or regions spend more because their patients are sicker and poorer” and declare, “regional differences in poverty explain almost none of the variation.”[19] In a similar manner, Nicholas Kristof, a columnist for The New York Times and an advocate for the poor globally, labeled as “opponents of health care reform” those who attributed poor outcomes to “America’s large underclass.”[20] In fact, poverty explains virtually all of the regional differences in utilization, and “America’s large underclass” accounts for virtually all of the differences in outcomes between the US and other nations.

Real healthcare reform would address these socioeconomic realities. Instead, the US is waging a regulatory “war” on exaggerated measures of waste, one that shows little promise of reducing costs or increasing quality but will assuredly crush “needed innovation by practicing physicians, who best understand the delivery of care.”[1] Moreover, because there are no risk adjusters for poverty, physicians whose low-income patients fail to meet federal utilization and quality norms will suffer financially, and hospitals whose poor patients have high readmission rates will be penalized. All the while, the “war on waste” will distract policymakers from building the social infrastructure that could lower the high healthcare costs of poverty. These are no ordinary times. For the first time, physicians and their patients are caught in the crosshairs of the “war on waste.”'

So where does this all leave us? The Republicans believe that market forces will help reduce costs and waste while the Democrats look for answers in the Affordable Care Act. What this tells me is that the system is flawed and needs changes which is nothing new. We can't look to politicians for reform as our sole solution. We need to look at the health care system to resolve this.

The Cost of Cancer Care, Part 3

The next topic I will cover is controlling costs in cancer care based on the next article availabe from CancerNetwork.com. Here's a little factoid:

"Cancer patients under active treatment comprise 1% of a payer’s patients but as much as 10% of costs."

Or 'Ouch!'.

Cancer care is expensive. How can the costs be controlled by still providing the patients with the optimal level of care in what is largely still a guessing game? Initial chemotherapy doses are often based on body weight. Then if a patient reacts, the doses can be adjusted down. If one treatmetn doesn't work or has adverse results, then a new treatment is tried. All of which may be very expensive.

Here's a 'brilliant' idea. Have physicians take cost into consideration when prescribing treatment. Well whoop de doo. What about the patient who is the center of all this? They should be the primary consideration.

So then why is cost a consideration? Because costs of treatment are too high and insurance companies are dictating treatment based on their perception of need vs. costs.

"Care for oncology patients, particularly in the adjuvant setting, is often given over predictable time frames. Instead of paying for each element of care separately, episode-of-care payments either can either pay a flat fee per unit of time or a flat fee for a defined care plan. The availability of accepted guidelines in oncology facilitates this payment approach.

Bach et al proposed such a model for metastatic lung cancer.[9] In this model, oncologists would receive a monthly payment derived from the average cost of caring for all patients with metastatic lung cancer. This payment would bundle the costs of chemotherapy, supportive care medications, and administration. Medicare payments would then be adjusted over time based on claims submitted during prior episodes. Physicians would have to demonstrate that treatment conformed to an accepted standard of care. The intent of the program would be to achieve savings by making physicians discretionary purchasers based on price. The downstream effect would also pressure pharmaceutical manufacturers to adjust drug prices downward in order to be economical within the structure of the payment model."

The crux of the problem is cost is so out of proportion to other medical costs that it must be considered for cancer patients. The problem though is the patient's life can depend on the chosen treatment.  I like the end result noted above that pharmaceutical manufacturers would need to adjust their pricing. Which is the real goal -  make the treatments less expensive - particularly in the US where patients unevenly absorb the research costs that are less frequently distributed to overseas patients.

Another model being reviewed is the Oncology Model Home:

"The medical home model of oncology care is another critical opportunity in the evolving delivery of oncology care, to both ensure quality and reduce cost.[12] The model emphasizes improved care coordination, recognizing that fragmented care acts as an important cost driver in oncology. This model began with the efforts of Dr. John Sprandio with Consultants in Medical Oncology and Hematology, the first oncology practice to achieve level III recognition from the National Committee for Quality Assurance.

The model employs several elements, with its key strength being its synthesis of multiple separate but important efforts in oncology: care coordination, open access, quality measurement, guideline adherence, and cost savings by preventing emergency department (ED) visits and hospitalization. Patient performance status is a key metric for decision-making, including eligibility for chemotherapy administration. This helps to ensure that patients are appropriate for active treatment vs palliative care. Dr. Sprandio’s practice has achieved reductions in ED visits per chemotherapy patient by 68% and hospitalizations per chemotherapy patient by 51%.[13] These are meaningful accomplishments, since the cost of hospitalization may equal or exceed spending on oncology drugs."

I like this idea better. Coordinating care with patient performance as a significant part of the decision making process. This makes the  patient the centerpiece as they should be.

Cost containment should never include rationing of care or so called 'death panels' as they are not humane options. In my mind the two issues are costs of care and the patients treatment/quality of life. Any other suggestions are welcome.

The Cost of Cancer Care, Part 2

Cost is now becoming a significant factor in people's cancer treatment decisions - something that should not be happening.

In the past decades, and more significantly in recent years, there have been many developments in cancer treatment. We hear talk about individualized medicine, new treatments which add months to stage IV cancer patients' lives, and more. But we rarely or never hear about the costs. I think of it as the silent side of treatment.

Often these new treatments costs tens of thousands of dollars or more for a single year of treatment with a single dose coming in at the multi-thousand level. What is wrong with this picture? Lots. Why should a patient make a decision on their life because their cancer treatment which could extend their life is out of their price range? Please do not suggest the patients ask for assistance from the pharmaceutical companies because that is not always available.

See this example from an article on CancerNetwork.com, titled "The Cost of Cancer Care, Part I":

"Three years ago, I counseled a patient after a gastrointestinal stromal tumor had been resected from his stomach. I was pleased to be able to tell him that imatinib (Drug information on imatinib) (Gleevec), a drug very well tolerated by most patients, would meaningfully reduce his risk of recurrence. Later, we learned that his out-of-pocket expense under his Medicare Part D plan would be several thousands of dollars for a year of treatment. The patient decided the expense was too onerous and that he would forgo treatment. Patient assistance programs are often limited for Medicare beneficiaries, and none could be secured. I pressed to ascertain whether cost was his sole concern, or if there was another unspoken reason for his resistance to proceed with treatment. There was not; his decision was purely due to cost."

There have been many significant advances in cancer research in recent years including a greater understanding of the biologic side of the disease. The research and FDA approvals can take over a decade to complete. Companies are then offered patent protection for 17 years (or something close to that as my chemo brain fails to recall the exact number) to protect their pricing from competition. Costs in research have escalated creating high drug costs. Other contributing factors are:

The ensuing problem is that costs are high for the patients, insurance companies have high copayments for new non-generic/non-preferred medications. There is a switch to oral treatments which are covered by pharmacy benefits. A chemotherapy infusion may be covered by a $50 copay but an oral chemo in pill form might have a several thousand dollar copay.  Its easier on the patient than going to the hospital but much tougher on their wallet. But research has helped saved many lives. There are more gains visible in the coming years as well but at what price?

"These gains have not come without a price. Research and development is expensive. Patients who survive longer under active therapy generally receive more intense overall treatment; this includes not just the therapy itself but also the radiographic and laboratory surveillance necessary to monitor ongoing treatment response and toxicity. While we strive for the development of more effective, less toxic therapies, this progress may be transforming into a painful paradox: the more we advance scientifically, the more constrained we become economically."

So how do we progress and allow advanced treatments, longer lives, and containable costs? That will be part of my next post.

[This is something new for me to have a series looking at a particular issue. As my personal cancer story becomes more of a maintenance factor and a new lifestyle with my other newer ailments, you may see more of these posts in series on differing topics but always ailment related.]

Costs of Cancer Care

I have decided to do a series on health care costs. A friend sent me a link to an article on the cost of cancer care which is in two parts. And then it had links to more articles so now I am on a roll.

The first article is on healthcare financing and how we pay for our care and insurance. These articles are published on CancerNetwork.com which you will have to join to free of charge to read.

"Fundamental to questions centering on the expense of cancer care in particular and of healthcare in general, is the way in which Americans pay for the healthcare they consume. Most Americans are covered by some type of insurance, and consequently, when they consume healthcare they do not bear the full cost of the care they receive. That is the point of having insurance. We insure against healthcare losses just as we insure our cars and homes against loss.

However, because most private health insurance is an untaxed form of compensation, we spend more on it than we would if it were taxed like other goods and services. This year the tax expenditure, or foregone tax revenues, on employer-provided health insurance is $128 billion. Further, public programs like Medicare and Medicaid are also taxpayer-financed. Altogether, public health insurance and tax-preferred private insurance increase the demand for healthcare relative to the demand that would exist if the programs and more favorable tax treatment had not grown to their current levels.

The point here is that the healthcare advances, the types of technological improvements, and the total spending are all related to the particular financing arrangements that now exist. Though often onerous for patients, out-of-pocket cost-sharing accounts for less than 14% of total personal healthcare spending, while third-party payers account for more than 86%. The out-of-pocket shares for the components of spending on prescription drugs and on physicians are about 19% and 10%, respectively."

So if the true costs of our health care are hidden from us in tax exemptions, tax payer burden, and out of pocket payments, how do we really know what our costs are? I think we all feel our health care costs and national health care spending is too high and out of control. But if we do not even know what our real costs are, how do we cope with it? That is before the collection agencies and bankruptcy courts take away the rest of our money because of the mounting bills.

My feeling is that we need to take a close look at all of the healthcare system and how we pay for treatment, insurance, and absorb the costs of medical advances. This needs to be done systematically and individually. It can no longer be a piecemeal situation where the haves and the have-nots receive different levels of care simply because of what they can or cannot afford.

Cancer five times

As a cancer patient, what is the worst thing we fear? Being told we have a recurrence or another cancer. So what if between the ages of 29 and 40 something you were told you had cancer five different times? Meet Chef Eric LeVine. He has done this.

I saw him on the Food Network's Chopped a while back and heard him say he had cancer five times. I thought it was significant at the time but not how significant. If you think about it, how many people do you  know that have had cancer five times? I spoke at a local senior center last year and a gentleman who had to be in his mid 80's said he had had cancer five times. But he was probably twice the age of Chef LeVine. Its not a common thing.

So Chef LeVine has turned it around and tries to pay it forward by helping family members cope.

"So I realized that the best way for me to use this knowledge - my experience - was to pay it forward.  Not with cancer patients, but with their families - teaching them how they can help their family member, the cancer patient." 

He talks about people who call constantly 'how are you doing?' and what a drag it is for the patient. It is a constant reminder about cancer and not helping you avoid thinking about it. (Its almost as bad as the people who ask you why you aren't getting the same treatment as their cousin's neighbor's dog walker's hair dresser's uncle who had a different cancer 20 years ago.)

One recommendation I do disagree with him is yes talk to the cancer patient about the crap going on in your life. I would much rather hear someone tell me about their witchy boss, or idiot co-worker, or evil in laws, or annoying children/neighbors, etc than to have them ask me how I am feeling.

However he has been through the cancer roller coaster five times and is still here. I wouldn't want to be in  his shoes but he is still here which is the really important part. When I am next in New Jersey, I will make an effort to eat in his restaurant and maybe even meet him.

A very 'helpful' study designed to confuse us all

I am sure that this morning's headlines (aside from Thanksgiving food, foot ball, parades, and giving thanks) will be full of the news that a new study has been released which says that 'Mammograms lead to unneeded treatment'. Gee thanks.

The study looked at test results from 1976 to 2008. The article makes two 'helpful' points:

• mammograms do not help find late stage breast cancers any sooner so the death rate from them has not gone down by much
• Between 70,000 and 80,000 women are treated annual for breast cancers that would never kill them

It also calls mammograms imperfect as they tend to over detect and find things that lead to anxiety and false positives. The current mentality is that if a cancer is found it is presumed to be deadly unless treated. So if cancer is found, we do not have a way of telling it from a deadly to a non-deadly so we treat all as if they were nasty. (Go find some patients with a tumor and ask them if we can wait to see if it kills you or goes away on its own? Not happening.)

In my mind, that is the real target. Finding ways to determine if a cancer is deadly or a cancerous tumor that is slow growing or will be reabsorbed by the body. That would be a whole new focus of research.

The Doctor Shortage

As baby boomers (of which I am one even though I am only 37) age, they need more care. Doctors are also aging out and retiring or working part time. Some doctors are leaving practice for research or other positions where they do not have to worry about malpractice lawsuits. Medical schools are not producing enough residents to fill the void. The prediction is a shortage of 90,000 doctors in the next 8 years.

If you compound this with healthcare reform where more people will be insured and seeking medical care, who is going to care for them? Granted there are provisions for medical training as part of health care reform to produce more doctors. And you do not need a physician to be your primary care, it could also be a nurse practitioner or other trained person. But sometimes you need a doctor.

It doesn't seem like a big deal until you are trying to see your physician and you are told they are booking out 3-6 months. Then the reality sets in.

I have many doctors (in case you hadn't noticed). They are actually very good about getting me in. The way it usually works, is when I see them, we decide when I will next see them and schedule the visit for three month follow ups (if I'm lucky). My rheumatologist is impossible to get into see in less than two months. But she will call and help me by phone if needed.

Where I am treated they are pretty good about getting patients in to see their primary care in a few days or any doctor on the same day. This is to avoid trips to the ER. They also have a walk in clinic (if you don't mind waiting in line) on a first come first served basis. Some specialists can take a little longer but you can call and ask for cancellations regularly.

However as a patient, we need to be aware of this looming problem of lack of doctors. What are you going to do if you wake up one day and can't move, or have shooting pains, or a stroke or something? If you work on it now and say 'what can I do in case I have this problem?' there may be ways to avoid it.

Granted we do  not know if we are  going to need a cardiac specialist or neurosurgeon or whatever in six months. But we can look at how we structure our care now. Is your care disjointed - with one doctor here, another there, and another elsewhere? If you need a specialist where is your doctor most likely to refer you? To a doctor in the same building or to a hospital 30 miles away? How easy is it to get to see a doctor there?

Again as part of being a patient, we need to  manage our care and manage up to  make sure there are treatment options available as we age and our care gets more and more complicated.

Evil, sneaky balance billing

And its legal in most states, unfortunately. Balance billing is when you use an out of network medical care provider and your insurance company covers $2000 of the $5000 bill. Then the caregiver turns around and bills you for the other $3000. How sneaky is that? But it gets worse. After a scheduled surgery you could find out the anesthesiologist, radiologist, and assistant surgeon are not part of your network could bill you for thousands of dollars.

The really super sneaky part is:

The medical care provider could be very quick to start billing you, send you to collections, and report on your credit rating.

And then sometimes your insurance company will pay all or a portion of the balance billing leaving you to undo all of the damage.

A portion of balance billing is illegal in Illinois and the is legislation in the works in New York. But if you get billed for teh balance, don't sit there, start dialing and researching to protect your bank balance and your credit rating.

Hospice shouldn't be a 'bad' word

What do we think when we hear the word 'hospice'? Face it, you probably think 'they are a goner' and wait for a funeral notice. How supportive and positive is that?

I have long suspected that hospices are not as bad as we think. Yes they offer palliative care when patients get to the point where they are no more treatment options. But they offer an alternative to nasty treatments. If you were the patient, how do you want to spend your last days/weeks/months?

Choice A is undergoing aggressive treatment which cause all sorts of nasty side effects resulting in discomfort and unpleasantness and you are either a patient at the hospital or taking frequent/daily trips for addition medical adventures? Choice B is receiving palliative care where your comfort is of utmost importance that is offered either in the privacy of our own home or at a facility which is quiet and full of caring people focusing on pain and your and your family's emotions?

Me I want choice B? I am a wienie. I do not want to die full of tubes and pain. I want to to go quietly (after trying as many options as are available). I do not want pain. I do not want to die alone in a hospital. Let me go write this down before I forget so that when the time comes my wishes are honored. (Damn, I'm turning in to my grandmother who had an 'in case of death' envelope - 2 by the time she died at 96 - full of little pieces of paper with instructions.)

A friend of mine who died from breast cancer a few years ago was receiving hospice care at home. I visited her about a week before she died and brought her take out Pad Thai. She was happy, cheerful, and on oxygen. Her mother and step father were visiting for a few weeks. But while there was no hope for treatment, she spent her last days pain free, living with her family and visiting with friends. That's the way it should be.

Hospices are trying to rebrand themselves in terms of the care they offer. People think of hospices probably just as you do - the goner thing. But hospices offer palliative care for months where people actually live longer and more comfortably than those undergoing aggressive last minute treatment.

One of the problems is doctors are referring people to hospices later and later. There are several theories on this including costs - hospice care costs less than hospital care but that means the hospitals lose the income from the patients. Also, doctors may be hesitant to admit they can no longer help a patient and by referring them to hospice, they are admitting defeat

Me I'll be signing up for hospice care when I need it. But I hope that is many years from now.

Health care reform

Now that the stupid election is over and we can  now focus on more important things than candidate hair styles, scandals, and mud slinging, we can take another look at health care reform. If Mr. Romney had been elected health care reform would probably have been on the chopping block. In the meantime, now that it is still alive, the poor insurance companies and hospitals have to make changes - note the sarcasm and lack of sympathy.

In the next five years more and more changes will be rolled out. Of the 91 changes, 60 are already in effect. You can see the full implementation timeline on at the Kaiser Foundation here. The last one takes effect January 1, 2018.

Some of the good changes are already in place - up to age 26 on parents health plan and temporary insurance for those with pre-existing conditions. There are still some new ones yet to start such as:

• Financial Disclosure: Requires disclosure of financial relationships between health entities, including physicians, hospitals, pharmacists, other providers, and manufacturers and distributors of covered drugs, devices, biologicals, and medical supplies. The first report is due to Congress April 1, 2013.   Ooh, all these hidden payments will now become visible.
• No Annual Limits on Insurance coverage
• Guaranteed availability of insurance: Requires guarantee issue and renewability of health insurance regardless of health status and allows rating variation based only on age (limited to a 3 to 1 ratio), geographic area, family composition, and tobacco use (limited to 1.5. to 1 ratio) in the individual and the small group market and the Exchanges.

I admit there are some parts of the bill that I don't like as much but overall I think this is forcing change on health insurance, medical device, and pharmaceutical companies as well as on medical centers, doctors, and hospitals.  The system was broken and I hope to see some positive outcomes for patients. After all, we are the ones that receive all this care so we should be better off.

I am being daring

Today I will be daring. On several fronts.

Back when I was in chemo a friend of mine told me to stop whining and get a hobby. I took up crocheting and then knitting.  Well back when I was in 4H and girl scouts I learned to crochet, knit, embroider, needlepoint and a few more girly-suitable-to-the-1960's (am I really that old?) skills. I hadn't thought of them in decades. When my sister in law was pregnant with my first nephew, I got inspired to crochet a baby blanket and took a stab at crocheting with her help and bought yarn and materials. Suffice to say he is 14 and the baby blanket now resides in a closet somewhere about 2" wide.

During chemo, I thought it might be time to finish the damn baby blanket. At that point my nephew was 9 and I knew he would no longer appreciate a baby blanket but he did have younger siblings. I promptly gave up on that blanket and started crocheting like mad. I started making scarves for family members. My addiction grew to encompass knitting - it was creative and non-fattening. The following year all my friends got scarves as well.

Since then, I have been making a stock pick to end all stock piles. I have a yarn stash that puts me clearly in as a member of SABLE (Stash Acquired Beyond Life Expectancy) even without cancer twice life expectancy. I have developed an addiction to yarn. I have a giant bag of yarn - you know those giant bags for storing comforters... Its almost full.

Now I have to go on the offense and get rid of my scarves so I can buy more yarn to fuel my addiction. I contemplated selling them in a local store on consignment but that didn't work out. I also thought about selling online at Etsy and that would have been a lot of work. Those would have been the easy way out. I wouldn't need to face down customers critiquing my products. I mean what if they don't like them? And say it to my face? "Gee her work is really not very good". Could I handle that? I'm not sure. I could also play the cancer card - I took up knitting and crocheting during chemo after my second cancer diagnosis so don't buy them for the quality but buy them out of pity.

So I was brave and daring on two counts and signed up for a local craft fair at a nearby school. My two counts of daring are: can I face my customers - I mean they could tell me my stuff sucks or is overpriced and not buy it. Ever. And can my body withstand a five hour craft fair? I will be  manning a booth by myself for the duration. I am equipped with a chair, a water bottle, a little bag of oranges (after a good healthy breakfast), some pain pills, and my cell phone to call my husband if I need to be bailed out.

I prefer to keep to the background but this will certainly put me out in public. So I will suck it up, put on my big girl panties, and face the music.

PS Please come to the Peirce School today by 2pm....

Antibiotic resistance

When was the last time you were prescribed antibiotics? And took them? The entire course of them? And what ailment did you have? I think the last time I was prescribed antibiotics was a few years ago after some surgery. I very rarely take them.

I hear more and more complaints from friends and family that they were sick for a couple of weeks, went to their doctor finally, and were told they would have to wait it out with over the counter medications, fluids and rest. They were not given antibiotics as they had expected and were frustrated.

This is a good thing. One of the biggest medical problems we have these days is resistance to antibiotics and the emergence of 'super germs' which cannot be treated with antibiotics. Too often prescriptions for antibiotics have been given without signs of infection and often prescriptions are not being taken for their entire course - the patient feels better but is not completely recovered and still has the germs in their body which now have the potential to become antibiotic resistant.

On Monday, I was a moron (to use the term loosely) and managed to cut the palm of my hand with pruners. Yes it bled a lot. Yes it was deep. Yes I panicked. No it wasn't very big. But as it was on my lymphedema arm, I called my doctor's office which sent me to the minor ER (who knew there is a minor ER but there is) in case it needed stitches. It needed a pressure bandage, no stitches, no steri strips. I felt somewhat like an idiot that I even went to get medical attention in the first place but was concerned about my lymphedema arm which is not supposed to have any punctures or pressures, never mind incisions from pruners, to prevent lymphedema which can become a permanent problem.

They also gave me a prescription for antibiotics and told me that at the least sign of infection to fill the prescription and take the entire course of them. I toyed with the idea of taking them to prevent infection but rejected that thought on the grounds that I really don't want to take any more medications at this point. I hadn't expected to get antibiotics at all.

I do think that patients go to the doctor and expect to get antibiotics for almost anything these days. Doctors are heeding the call of reducing prescriptions to prevent the emergence of more super drugs but patients do not always understand.

As patients we need to understand the bigger picture. Antibiotics are good but should not be taken unless they will help. And if you take them you need to take the entire dose.

The Cancer Decisions

Back in the dark ages of medicine in the 1980s and earlier or so, doctors were gods. They gave us a diagnosis. Told us what our treatment was going to be. We didn't have to make any decisions as our doctors told us what would happen.

Now in 2012, our doctors tell us our options and we make informed decisions based on the advice we have received. That way our wishes are included in the treatment plan...

Wait just a minute here, we have to make informed decisions which means we must do work and figure out what we want? What happened to the easy days of the past where we got to sit around as the patient and be cured without any work?

How are we supposed to make these decisions? What if one of our decisions turned out to have as good an outcome as we wanted? Now our stress level goes up! What to do? What if I was wrong? What if I didn't understand fully all the possible outcomes? Oh, no........

A person with a cancer diagnosis is given treatment options and needs to make decisions which could determine their life span, based on what their doctor tells them and they learn elsewhere. It becomes highly stressful. Should I do chemo, then surgery and then radiation? Or should I opt for radiation followed by surgery? Or should I skip chemo and go straight to radiation? There are too many decisions!

This happens all the time. I see it on message boards everywhere.Also, a doctor has blogged about it on Cancer Realities at WebMD.

Doctors are now encouraged to involve patient wishes in their advice. Patients are becoming more and  more informed. But these decisions can be very difficult to make. A patient can be faced with regrets and fears - "what if I made the wrong decision and it comes back and kills me?" This is an added pressure.

Where I am treated, after my breast cancer diagnosis in 2007, I had a day where I met with the surgeon, medical oncologist, the radiation oncologist, and a social worker. At the end of the day, they came to me with a treatment plan and an explanation of the options they had considered. They wanted my opinion - what I was stressed, shocked, scared, and more -  was I comfortable with their recommendations? I actually felt relatively calm about it as they presented a group recommendaiton to me.

This is a far cry from my  thyroid cancer diagnosis in 1981, the technology wasn't there to help determine whether the lump they felt was cancerous or not. They just told me they were removing it so they could see if it was cancer or not but they really felt because of my age and thyroid cancer's then rarity that it was probably just a goiter.... There was some comfort in being told what to do as opposed to making any decisions.

Do I like making the decisions in my treatment? Yes. But some are definitely easier on my brain than others.

Outrage against the pink machine

I finally watched Pink Ribbons Inc - a Canadian made documentary about breast cancer as the poster child of cause related marketing. (My apologies to AnneMarie over at Chemobrain Fog for taking so long to get to it but now I will pass it along to others.) My single thought on the film:

OUTRAGE

- how can they 'use' such a nasty disease to their benefit? The 'they' here are corporations who claim they are doing good but really are just using it are a marketing promotion. Here are a few quotes that stuck with me:

- one woman with stage IV breast cancer said there is 'no integrity' in this pinkification on where the dollars go. Companies make the money but how much really goes to the cure, who oversees the research to make sure they are a group effort in working towards something real instead of just dabbling at it in different parts of the world.

- Nancy Brinker really got me with this one. She said "until there is a cure, there is not enough pink." Oh, please. You just like wearing pink suits with your debutante Junior League hair style. We aren't talking about a paint color here. Its a real disease and you can't sugarcoat with some pink and make it cute. By focusing on the color pink you are ignoring the impact of the disease on women's and their families' lives. There is nothing pretty and pink about breast cancer.

I do like the advice that if you have breast cancer you should do something besides worry. Trust me I know this one well. Sitting around and stewing about your health - one ailment or 1000 ailments, does not help you at all. Going for a walk or a run to get in shape will help distract you and might even help your health and if the goal of a pinkified event will help you is fine if it works for you. But you could just send in a check and go for a daily walk with a friend or two and not be part of the pink machine.

My personal goal now is to avoid the pink machine as much as possible in my life.

Find a copy of Pink Ribbons Inc. You can buy it at Amazon now. You might even be able to take it out of your library. Have some friends over and be prepared to be outraged.

The 'Good' Cancer

Here we go again. Another Hollywood star with cancer. Let the myths and hype begin.


First we have CNN talking about five things you need to know about thyroid cancer:

1. Thyroid cancer strikes more women than men. We can't dispute that one.
2. Its a young person diseases - striking more and more under 55 - but actually becoming more common in teens and twenties.
3. Its not an obvious cancer. It can go undetected for a long time. But since its slow growing, late detection is not necessarily fatal.
4. There are more than twice as many cases as there were 30 years ago.
5. It has a high survival rate so its a 'good' cancer.

Thats a nice little recap. But it doesn't begin to tell the story.

Yahoo says that Brooke Burke has a 'good' cancer as well. and they go on to add:

"The thyroid is a butterfly-shaped gland located at the base of the neck, just under your Adam’s apple. It’s responsible for producing hormones that do a variety of functions in the body including regulate blood pressure, body temperature, and weight."

So now blood pressure, body temperature, and weight become much harder to control without your 'dear little thyroid' or DLT. Now add to that the fact that it can recur 30-45 years later and requires a lifetime of vigilance.

After removal of the DLT, there are some people:

• who never can balance their thyroid levels and have to have constant testing and retesting to see if they can keep it under control
• who experience of life time of complications

Any one, including a doctor, who tries to tell me that it was a good cancer, seriously has no clue.

If you have cancer, you need friends

There was a new study, because we needed a new study to keep the researchers busy, that says if you have a social life, you are more likely to survive breast cancer. I would assume this is the same as with other cancers. This even makes sense to my tiny little chemo brain.

There have been other studies showing that women who participate in breast cancer support groups have better outcomes and cope with treatment better.

If you have friends and a social life, even if you aren't going out three nights a week, it means you are talking to people, communicating your feelings, and interacting which saves you from sitting around and being depressed about your health, medical bills, or latest side effect.

When faced with a cancer diagnosis, many so called 'friends' run for the hills and you never see them. Then your real friends stand by you. Those are the ones who are important and you should spend your time with.

Also, going to a support group where you meet other people going through the same thing is very supportive as I noted above. Finally, online groups - whether Inspire, Facebook, or elsewhere - can help you find more and more support. The more people you can help and can help you, the better you will feel. While online friends are not the same as in-person friends, they can greatly contribute to your well being especially when you are not feeling well enough to get out.

So while cancer drives some friends away, go find real ones to compensate who will help you unknowingly.

Germs and me

While in chemo, I was supposed to avoid exposure to germs (public places, germy people, unwashed vegetables and fruit, etc) because my immune system was compromised and I might get a 'bad' ailment as a result. I was very good with that advice. I ate lots of fruits and vegetables and did whatever I wanted. I went shopping at the mall and went to work, went to parties (when I wasn't nauseous), and went to the beach.

Basically I ignored that part of the advice and did whatever I damned well pleased. I was in cancer treatment. I was special. I had to look after myself first and had enough to cope without worrying about the stupid little things.

Now with RA, I am on Methotrexate which (I need to learn how to spell and) has all sorts of 'lovely' side effects. I cant wait:

• according to WebMD, it can cause temporary hair loss which will return after you stop taking Methotrexate. Now there is something I can't wait. I still have my wig. If that happened I would talk to my doctor about a different treatment option. It is a relatively rare side effect but after my chemo hair cut I am not allowing this to happen again.
• according to the fine print from the pharmacy, it says (in all caps) that this medication may lower my resistance to infection. I should wash my hands regularly and avoid germs, blah, blah, blah. I can go to AARP and find out how to avoid germs in public places. They advise not touching restaurant menus, condiment bottles, doors in public places, soap dispensers in restrooms, and more. (I'm not old enough for advice from AARP. Well they think I am but since I am still 37, I'm not.)
• It can also cause liver problems, bone marrow issues, blah, blah, blah.

Well, I will be a good patient here. I will learn to spell it. I will live my life as I want. I believe a little bit of germ exposure is good to keep you healthy. But I am not stupid and will not go visit people with the flu.

Mother Nature and Medical Research

We often hear about medical research being at the 'mouse test' stage. This stage is actually usually after many years of research which needs to be followed by more research. These mice have been inbred, overbred, mutated, and who knows what (I always feel sorry for the mice). Unfortunately hurricane Sandy is responsible for the loss of years of research.

As NYU medical center was evacuated and power systems failed, many mice and other cells and tissue samples met with their demise. This means many research programs will be set back by years. Damn.

A lesson to be  learned here is that no matter what is put in for back up systems and redundancy to safeguard research and materials a natural disaster can get around it. I am sure they had generators and back up electrical for incubators etc. But who knew labs would be flooded, caretakers could not get in for days, etc? It may have been unforeseen before the end of October, but now we know.

Our real lesson to learn is that you can't mess with Mother Nature.

Taking charge of my health

I have fallen into a rut of bad behaviors:

• I am eating too much leftover Halloween candy. This is a new 'bad' thing. We never have candy in  our house so we are taking advantage of it. We did not get the trick or treaters we thought we would  and have had candy in the house. I think I need to hide it from us until my brother comes to visit with his wife and four children over Thanksgiving. I can safely say there will not be any candy left by the time they leave.
• We need to eat more fruit and vegetables. This is not to say we do not eat fruit and vegetables. We both have a piece of fruit with breakfast and another as a snack during the day.  We also have a vegetable with dinner every night. But some how we have gotten out of the habit of eating a salad as a first course every night. I have to fix that. 
• I need to lose 20 lb. - see the two items above. Decrease candy + increase salad = weight loss.
• New ailments and on going old ailments make me feel crappy and in pain more and more. I need a lot less of that.

I have to focus on my long term health. After discovering I was allergic to my first two RA drugs, my rheumatologist said something to me and I said 'I am focused on my long term health." It has to be my goal. I go to the gym three times a week and do as much of my work out as I can - some days about half, some days more.

With my medical history, I have to be more proactive than the average person. I have to increase my fruit and veggie intake. I got my flu shot. I do get exercise. I need to be in charge of my health again. I have been lazy.

Medical marijuana

I will admit that I am of the generation who might have inhaled from time to time but no longer. That was over in the 1980s for me. I stopped because I decided I didn't really enjoy it (and it made me fall asleep).  Now medical marijuana is looming around the corner as it was just voted in here in Massachusetts.

In principle I do not have a problem with medical marijuana as long as it is for medical use only. Based on some personal experience I can see how it could help cancer patients with  pain and nausea. But I have also seen all the stores in California selling 'medical marijuana' all over with ads in the paper touting their new varieties so they look like your basic pot dealer with a website..

I believe there are 17 states which allow medical marijuana and have had resulting drug use increases and crime problems near the stores.Based on these other problems, Massachusetts has a plan, with 120 days to get it implemented, that includes a maximum of 35 medical marijuana stores, no more than five per county, and not near crime areas or schools.I think as long as this is controlled so that patients have access to it but we aren't allowing teenagers or substance abusers to have it that would be fine with me. Someone will have to figure out that barrier.

What I do have a problem with is the most common way to use marijuana is to smoke it. So if a cancer patient is dying, do they have to smoke it to get the benefits? I would have no desire to smoke it - I like living in a smoke free world.Or do I have to make fattening pot brownies and eat the entire batch? Or make spaghetti sauce using it as an alternative to oregano? Or any other of the creative alternative uses of marijuana from the 60s and 70s? (I'll plead the Fifth on these if you ask how I know about them.) Does it come in tablet form?

And if it helps with nausea, what happens if the ensuing 'munchies' occur. It would be better in that case to eat a normal meal instead of the typical pot smokers bag of Fritos or batch of cookies. Would you have to plan your munchies?

So while I am for medical marijuana I do have some issues of it. If it came down to me using it for pain or nausea, I would definitely consider it. But would want to see it controlled properly. As my health continues its lovely downturn I am all for creating legal options for patient treatment but want to ensure the legalities are upheld.

PS My appointment yesterday was fine. I am now on yearly follow ups with my radiation oncologist instead of every six months.

Hobbling around made me forget

Sunday was a bad day for me - I helped at an event on Saturday night and was out for about three hours but evidently I stood up too much. Sunday I was in so much pain I would have preferred to spend the day taking it easy but I sucked it up, took a tramadol and met some friends for lunch. Monday wasn't much better. I made  it out for a walk with a friend.

Tuesday by the time I left work, I was in a lot of pain but went to the gym and did about 2/3 of my newly shortened workouts. Also on Tuesday I talked to my rheumatologist and she put me on methatrexate for my RA. It will take a couple of months to start working but the hope is I am not allergic to it as I reacted to Prednisone and Plaquenil. I will take my first weekly dose this morning.

Then I will go to my six month follow up with my radiation oncologist. I completely forgot about that. I have not had time to stress about that visit because I have been side tracked by RA and Fibro. Its not to say cancer has taken a back seat in my medical life but that the pain levels from the other issues are preventing me from stressing about cancer as much.

Maybe its time my life was diverted from cancer-cancer-cancer-cancer to cancer-pain-RA-fibro. There is more to life than cancer. My doctor appointments are  not just oncologists. Now I have added a rheumatologist to my two oncologists, endocrinologist, surgeon, and pain doctor for regular visits along with my PCP.

Now I just have to remember the questions I had for my oncologist this morning. Its always good to have questions.

The last day

Today is the last day (FINALLY) of the election. We hope. I have heard that the lawyers are already lining up to sue if necessary for questionable election processes. They are political ambulance chasers. I have avoided politics (and pinktober) but will now have my say.

Go vote. It doesn't matter what you think, who you want to win. Go vote. If you can't get there on your own, ask a neighbor for a ride. If you live somewhere that is devastated by Sandy, go vote. The only excuses for not voting in a significant political election like this one is being bed ridden. Even then you could have gotten an absentee ballot. The astronauts in the space station voted by absentee vote and they are VERY far from home.

Tomorrow, I hope, we will have political results instead of court cases. If you don't vote, you don't get to complain about politics anywhere near me.

Health activism soapbox

#NHBPM Being a health activist is a new role with the use of online media. I define health activism is taking the time to learn about your ailment, share your information with others, and work to help others cope with the ailment. It can also include advocacy and outreach efforts.

WegoHealth wrote a white paper about what is a health activist tht you can read here.  Their definition is:

"Health Activists are leaders who work daily to improve the way people talk and think about health. If you are sharing your health story and helping others live better lives – you may already be a Health Activist. Health Activists are passionate about raising awareness for health causes, dedicated to finding the best information about health conditions, and relentless in their commitment to help others. They are also adept at using every tool possible to reach their communities, especially through social media."

I have some how gotten myself into this role for breast and thyroid cancer. I am comfortable in this role for these two ailments because I have educated myself, taken the time to learn about them, and am comfortable sharing information and directing others to resources that will help them.

I do a lot of this through this blog but also on Facebook and other message boards. You see me do this when I write about an article, or a website, or treatment experience. This is activism in action. This helps me cope with my cancers by helping others.


My problem now is I need to get myself to the same level of knowledge on my newer ailments - fibro and rheumatoid. If I can get myself educated on them  so I can become more comfortable with them. Will I end up as a health activist for them as well? Only time will tell. But it will help me cope.

Sharing information

Today's topic for Wego Health Blog month is choosing what information to share.

When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.

At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.

I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.

At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.

So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.

If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.

The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.

So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.

Conversations with my doctor

Today's topic with Wego Health Blog month is a choice between something about learning something or on a conversation with my doctor. Its too early in the day (and I'm too stressed) to think about learning something and I have many doctor appointments that I could write about.

There are two doctor conversations to write about. The first one happened in August 1981 when I was in post op after having my thyroid removed. I was dazed from all the sedation but the surgeon came in and sat down next to me and told me that I had thyroid cancer. That's all that I remember of the conversation but those words were forever etched in my memory.

The second conversation happened May 30, 2007 when my surgeon called after my biopsy to tell me that I had breast cancer. At that point I had been living in the 'la la land' of  '80% of all tumors are benign' and assumed it was a nothing as I had a previous benign tumor back in the 1980s. The doctor called me at home and I was sitting on our bed holding my husband's hand. The surgeon again was reassuring and answered a few questions and gave me the next steps of a lumpectomy with sentinel node biopsy followed by an axillary node dissection if needed. We had already discussed these options in his office.This conversation is no less etched in my mind.

What was the impact of these two conversations on my life? A medical roller coaster with no end.

But what doesn't kill you makes you stronger. As a result of the conversations my life changed irrevocably and I have come out stronger, ready to face these diagnoses and others more prepared. Now I know what to do with a new ailment - research, questions, education, treatment, and more. And I'm still here.

The devastation

I am watching the morning news and looking at the pictures of the devastation from here to the mid-Atlantic coast. I a amazed and appalled. There are still 6 million households and businesses without power. Natural gas is leaking all over. It will take decades to restore what one storm took away. I have no words.