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.