Jul 26

Reflections on Universal Health Care from Someone Whose Sister Just Died of Cancer

After battling a brutal leukemia relapse for six months, my sister passed away this passed May. I like Lance Armstrong, but the reality is that cancer doesn’t always lead to a bunch of Tour de France wins for people.

I did my best to keep my chin up and to stay optimistic. Deep down, I am still incredibly angry and actually debated leaving this country to go somewhere with universal healthcare and a conscience about the environment. Here’s why.

When we think of cancer, we think of Lance Armstrong on the bike. We don’t think about a severely swollen 41 year old single mom with blisters with the diameter of a softball, who can’t get out of her bed for six months. My sister’s blood platelet count was so low, she bit her lip softly and it started to bleed. When a nurse went to brush her teeth with a small sponge, her gums bled. Anti-fungal drugs made her hallucinate about bugs and gave her dreams that Obama was going to get shot. Her skin was jaundiced and her eyes were yellow. She sometimes would cough up stuff that was so black, it was hard to conceive it coming from a human body. In the months before her death, she had both a tracheotomy and was on oxygen. She was restrained to the bed and at several points, I had to prevent her from disconnecting her oxygen and killing herself because the drugs did crazy things to her head. I felt like I was facilitating torture against my own sister. There was absolutely no dignity to the way she died and I was happy she finally passed because she wasn’t suffering anymore.

So frequently, I would be in her in room and I’d want to take a picture of her. I wanted to send that picture to Monsanto and all of the other companies creating sketchy products, as well as to big pharma that seems more driven to treat cancer than to cure it. I wanted to send it to the politicians who permit healthcare to be a business. What happened to Deb has happened to millions of people and could just as easily happen to them. I refrained because I wanted to maintain Deb’s dignity.

My sister didn’t just die of cancer. She died of a lack of hope. Even if she had been cured, there’s no way any employer would want to deal with her health care costs. Doctors would have thrown every drug her way, and each of these drugs would have some weird side effect. Her life would be inundated with paperwork. For every Lance Armstrong, there are millions more who suffer in fear of a relapse and the absolutely barbaric treatment associated with cancer.

I asked my sister before she died, and she did support universal health care. She believed people should not have to worry about whether their treatment would be covered or not because they should just focus on getting better. I’m not faulting Lance Armstrong by any stretch, but we don’t all have big companies like Nike backing us up when we get sick.

My endorsement of universal health care comes with a huge caveat though. I want Americans, non-profits associated with cancer, and politicians to seriously look at the carcinogenic effects of the American lifestyle. Right now we are consuming foods that have been sprayed with Roundup, which is known to cause severe health effects and avoided in many parts of the world. We eat chickens and turkeys that are given hormones to make them so big they can’t even walk. We drink milk from cows that are given hormones to produce more milk. What do you think happens to these hormones and chemicals? You are what you eat–remember?

I am tired of politicians protecting companies that poison us and Americans who turn a blind eye to all of this. Ask the people of Aniston, Mississippi about the devastating effects of pollution on their community and ask them how the legal system left them astray. These people were hit hard by Monsanto’s pollution, but what are the effects of a little pollution to everyone over the course of a lifetime? The Native Americans understood the connection between the land, air, and water they surrounded themselves with and their own personal well-being. We are turning a blind eye to the horrible things companies are doing to our food and to our land and we are paying the price.

Cancer isn’t a business. It is something that is killing us and destroying our quality of life. IT’S NOT JUST HEREDITARY, PEOPLE. There are second world countries who have longer life expectancies than ours. We spend more per person on health care and yet people in Andorra and 43 other nations live longer than we do. We are poisoning ourselves as a nation, and to avoid a tax burden to us all through universal health care, we really need to take back our land and our food from the corporations that control it first.

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  • http://www.youfightingcancer.blogspot.com Randy Perry

    Michelle,
    Agree with you. What we are doing to our food supply alone will at some point kill most of us, via cancer, heart desease, or diabetes (the BIG 3).
    The pharmaceutical companies profit from all of the above and will continue until we stand together and fight.
    In 2008 567,000 people (Just in the US) of cancer. That’s over 1300 a day??? Do we get news air time on this on the nightly news = No. Wonder why?

  • http://www.livestrong.org LIVESTRONG

    Michelle,

    We are so sorry about your sister’s death. You are correct, Lance is not the norm. We know all too well the realities of cancer: pain, death, lack of coverage, financial devastation and depression. That is why we exist as an organization. It is our goal to make sure we close the gap between what we know as a society and what we do. We know that access to early detection and quality care saves lives. We are fighting to make sure that people in the United States and worldwide receive that care so they can live full lives. Please know that we support you and your family and that we will work in your sister’s memory. Peace and strength to you.

  • http://jeffg.org/ Jeff Gehlbach

    Agreed, our food supply is a mess. As the closing narrative of Food, Inc. points out, each of us gets to vote three times a day.

    Very sorry to hear about Deb; I hope that her story will raise awareness in a way that makes a real difference.

  • http://michellesblog.net Michelle

    @Randy,
    When I try to tell people about this stuff, it’s like they turn their ears off, like if they deny it it goes away. My sister and my dad have had cancer, and I am so scared I will get it and won’t be prepared to deal with it.

    I will pray for your recovery and please let me know if there is anything I can do for you.

    @livestrong
    Early detection is key, for sure. If it were up to me, you could get a cancer screening as easily as you could check your blood pressure at the grocery store. I’m glad Lance uses his mojo for the cause.

    @jeff
    Yes, to me, this is the part we hear the least about. American food is pretty nasty as a whole and the food lobbies will do everything they can to keep it that way. Trans fat isn’t even food. It preserves food on the shelf–what makes you think it breaks down inside the human body? The bonds don’t even break down the way they do with natural fats.

    I wonder how long it will take us to figure it out, if we do at all.

  • http://www.overprocessed.com/ Dieter von Schramm

    Great post Michelle. My mother is now seven years cancer-free, but still needs medication and resources to take care of her severe lymphedema and permanent damage left from treatment. As you stated, she is unemployable due to her health care costs which leaves her unable to pay for these things herself. My grandfather, who was like a father to me, died from Melanoma. He was a chemical engineer for Union Carbide, and I cannot help but think constant exposure to chemicals played some part in his death. Things were a lot less regulated in their time, but our government is still allowing poison into our food and environment. This will not stop until there’s a universal outcry against our system’s policies.

    I liked your reference to Native Americans. I’ve always respected their culture and philosophies. Until we start living more like them, we will reap from the seeds we sow.

  • http://michellesblog.net Michelle

    @Dieter I’m sorry about your mom and your grandfather. I just often wonder if all the “advancement” is worth it. Chemicals can be good but they can often be harmful, and I don’t understand why everyone turns a blind eye to it.

    The situation with your mom is common. It’s no fun for them because they can’t be productive or they lose disability. A real Catch-22.

  • http://www.familiesfacingcancer.org Anne Orchard

    Hi Michelle,
    I’m so sorry for your sister’s suffering, and that you and your family are still going through the difficulties created by her illness and death.
    I was at a conference recently where Professor Mike Richards, who is head of the response to cancer in the UK, said that 50% of cancers are believed to be preventable. This doesn’t mean we will live forever, but so far as a society we are not doing what it takes to prevent cancer or other illnesses – in fact, quite the opposite.
    I wonder if you have come across the book ‘A Return to Healing’ by Dr. Len Saputo. I met Dr. Saputo at the Book Expo earlier this year and was most impressed with his passion for turning the US healthcare system from a disease management paradigm to a wellness way of thinking. I would highly recommend the book. Good luck to you with raising awareness – if even one family has a better outcome you will have done a wonderful thing.
    With best wishes,
    Anne

    Anne Orchard
    Author ‘Their Cancer – Your Journey’

  • Carlos Lama

    Michelle:

    Thank you for sharing the experience of your sister’s passing. Witnessing a loved one endure the ravaging effects of cancer is at times unbearable. I lost both my father and mother to cancer 25 and 23 years ago. They were 42 and 41 years of age respectively. That experience both shocked and propelled me to demand more from myself and the world we live in.

    We must continue to bear witness and demand to know the truth about the foods we eat, and the chemical dangers in our environment (and from my own personal experience the benefits of cultivating healthy relationships). Your story has helped reaffirm my values and commitment to them. Thank you.

    Peace and praxis,
    Carlos

  • Michael

    Michelle, I am writing you because I was referred by a friends post/link. I am truly sorry for your sisters experience. I have recruited doctors on behalf of hospitals across the country for close to 8 years.

    The Hematology/Oncology (HEM/ONC) physicians have been under attack by the government for years. For those of you who may be unaware, HEM/ONC’s are “cancer doctors” with HEM (blood) ONC (cancer). When I recruited my first HEM/ONC physician in 2002, the offer was around $550,000 with the potential to exceed $1M. I placed a HEM/ONC in the Woodlands in March/April of 2009 and his compensation was $220,000.

    Most of their patients are the elderly, therefore most of their patients are on Medicare…therefore most of their interaction in getting reimbursed is with the US government, not private insurance. I’ve seen their reimbursements decrease by over 50% in some cases. As a result, I have seen these HEM/ONC physicians increasingly care less about the patient and more about keeping their practice open, paying their mortgage or sending little Billy to college. It is a classic “cause & reaction” situation that is silent and unannounced to the general public.

    I do not represent doctors. I represent you. I became angry as I read your story primarily because your sisters experience could have possibly been prevented or at least treated with more dignity. Unfortunately most of the doctors I know do not have a good bedside manner, are extremely paranoid that they are being cast as the scapegoat, and primarily practice defensive medicine because they are afraid they will get sued by their patients.

    I thought that with an event as important as this, you would want 2 big questions answered; Why? and How? They Why has been stated by you in that our health care system is seen as a private matter and not a national right, whereas other countries consider it their duty to take care of all patients and with dignity. I hope I was able to give you one small opinion/example of the How and give you some insight. I hope your concern continues to grows and helps to educate the general public more everyday. I wish you peace and continued strength. You, your sister and your family will be in my prayers tonight.

    Kind Regards,

    Michael

  • http://anticancerliving.wordpress.com/ @tavdb

    Michelle,

    Your anger is well placed on all fronts.

    – Thomas (diagnosed with cancer at 17, 34, and now at 41)

  • Gina

    I am sad to hear your sister had to pass away from such a terrible disease. You have brought up two very important issues that I strongly believe have impacted our health, lack of prevention and consumption. I have a difficult time believing a universal health care system will provide us the kind of care we need and here is why. You mentioned Mansanto (and there are others) and our production of chickens/turkeys and dairy. Our government allows these actions to continue while being very aware of the potential risks. They are not looking out for our best interest and only looking at it from a financial gain. So this same government who will allow hormones and GMO products to feed their people they represent is now going to provide us with health care?

    I do think there are other policies that should be in place to help those who are less fortunate and unable to be insured. Do I know what those are? Not at this moment. But I do know that there have been policies that have negatively impacted the way a patient is treated because it benefits big Pharma companies.

    My daughter (14yrs old) was just diagnosed with Crohn’s Disease. I am a strong believer that there is something environmental that has triggered this. I am annoyed that our government turns a blind eye to our food production when our country is seeing increases in cancer, autoimmune disease, heart disease, autism, etc. We don’t want to find the solution to why because that will make a drastic impact on some major companies that line the pockets of our policy makers.

    My apologies for the rant. I feel your pain, and hope that those who are truly looking for a cure to these diseases persevere and prevent what your sister and family had to go through.

    God Bless,

    Gina

  • http://www.jeffobrienphotography.com Jeff

    Michelle,

    I actually was directed to your blog in pursuit of a tennis partner, but came across the well constructed post about your sister’s situation with cancer. I can only say I have been in your exact position, watching a loved one deteriorate into nothing and die which is a graphic death from one of the most horrific diseases known to mankind. You bring up 3 very pertinent points which I cannot move on from this blog without addressing: 1) Food/diet 2) chemicals 3) Insurance companies.
    1) Food diet-My mother who passed away from esophageal cancer lived as a vegetarian only eating organic vegetables, fish, shellfish with little to no fat in her diet. Posthumously her life long recipe catalog was published into a cookbook http://www.amazon.com/Vegetarian-Revenge-Better-Without-Chemistry/dp/0978629523 which boggles my mind as to the source of her cancer. No she was not born a vegetarian and not until her late 20′s did she whole heartedly practice the healthy diet in her book, but it is evident that her diet and food intake clearly was with direction to side step the “factory farmed”, hormone injected and chemically engineered foods that most of us consume on a daily basis- so to this day I am always questioning how it happened which leads me to my next point 2)Chemicals-”The round up theory” – In the area of the United States where she lives, breast cancer in women is of the highest rates in the United States, actually 40% higher than the National average http://pub.ucsf.edu/magazine/200404/paradise.html and additional other cancers such as prostate and lung cancer. What is it? Is there too much Round up? Is it the hypothetical scare tactic that 30 miles off shore of the California coast there is a toxic dump that has infiltrated the water aquifers that charge the drinking water system. The sad part about the Round up theory is we will not know-too hard to detect except for in extreme cases. At least we can test/review the foods we eat and with minimal effort, an individual can determine that specific foods will cause health risks via heart disease, obesity, or genuinely putting hormonally enhanced meats or farm raised fishes (fattened up with dye pellets or swimming in farm polluted waters)in to one’s body will harm them. But when it comes to the environmental carcinogenic factors either accidentally or irresponsibly released in to our environment, we really have to rely on those responsible for those toxic particulates and hope their conscious will make them do the right thing. In the event one contracts a terminal illness, be it cancer or some other devastating illness, one can only hope and pray that their health insurance does not give out on them; So 3) Health Insurance: In my mother’s case, her husband was a physician and had the benefit of exceptional health care. My “wow” moment was when things became more complicated for my mother and watching her suffer, I said to her husband, ” This is so awful to watch her die and like this, I cannot believe that people die with such lack of dignity, poor care and suffering” and he responded, “Most people do not have the luxury to pass away in such a nice way as this.” I realized if what happened to my mother with a terminal illness was the cadillac version, I can only imagine how bad it must be for most. I will not go in to the details of the progression of her disease to respect my mother’s privacy, but Michelle has done a great job illustrating how wicked the task is to assist a loved one to pass and to witness the deterioration of the human body-I feel it is essential for loved ones to hear stories like hers before and after going through a cancer death in the family as if allows one to realize that what happened was not just something freakish that happened to just “my” family member. Universal Healthcare (I was sidetracked)- I am PRO Universal Healthcare- I endorse Michelle’s comment about emphasis on wellness and diet and it would be great to see the political machine shut down some of the for profit agencies that contribute to the laughable American diet-but to the core issue of Health Insurance, frankly for many I am fearful and most fearful for myself. I am a self employed person, wife, no children and pay a huge monthly amount for 2 healthy people to get mediocre insurance. In the event I contract any terminal illness, I have absolutely no guarantee or assurance that my health insurance company will stand behind me and my needs despite the tens of thousands of dollars I have paid over years to have coverage for really something bad. If I go to my Dr. today and he says I have high cholesterol, blood pressure, a blip on a blood test or whatever, I run the risk of losing my insurance and being dropped. Then I would have to go through the Spanish inquisition of questioning to try to give away thousands of dollars a year for less coverage to a new company and the potential to be dropped for a myriad of reasons whether disclosed in fine print or not. Health Insurance companies should be ashamed of themselves for taking advantage of Americans like themselves for their own profit. Every night those people go to bed with a guilty conscious and when they have heart problems due to stress associated with this, I hope their insurance fails them as well. The government has a moral responsibility to make sure people can have Health care- to keep us healthy and prevent illnesses to reduce costs. As Michelle mentioned, after going through my mother’s cancer and evaluating my own Insurance situation, we seriously considered leaning on my wife’s Canadian birth to relocate to Canada for the only benefit of a safe commitment for health care that would not leave us on a limb in a terminal illness situation. We still periodically consider this but hopefully with a moral wake-up-call the US government will do the right thing. I wish to make a final comment about this and say I am happy to pay generously for my own health insurance whether private or Universal as long as I know I have assurances that it will be there when I need it, not fail me if I get a terminal illness or if I develop a disease that excluded me from coverage, I will still have rights, right now I do not. I have watched and read at length the arguments about health care-Frankly I find it disturbing the country cannot agree on a moral and common sense decision to take care of our own people, our citizens, children and elderly (who luckily have medicare). If something does not change in the near future, I may be looking for a tennis partner north of our border. Sorry for the rant-but someone’s got to say it.
    -Jeff

  • http://michellesblog.net Michelle

    Jeff,

    Thank you for offering your insight on my blog and opening the dialog. I hate cancer so much for doing this to people and I hope there is a wake-up call to Americans that we need to figure out why such wealthy people cannot live healthy lives.

  • http://www.wealthyhealthywise.info/blog Cie

    My condolences on the loss of your sister.
    Cancer screenings are still out of range cost-wise for low income people. There was also an article in the Daily Camera about women with breast cancer who were dying because they couldn’t afford treatment. This should NEVER be allowed to happen. Treatment should be available regardless of ability to pay.