Tuesday

It's Ok, Stop On By, It's Not Contagious

So, I've been doing a bit of breast cancer for the past six or so months.

I hadn't really planned to write about it until I saw this documentary and felt inspired to, at the very least, share the doc and draw attention to the website for the Harold P. Freeman Institute for Patient Navigation.

"Successful patient navigation supports those diagnosed with suspicious findings by eliminating barriers to timely screening, treatment, and supportive care of cancer and other chronic diseases. Patient navigation saves lives and improves resolution rates of patients. When implemented at the organizational level within a community, it results in increased efficiencies and improved outcomes"

See, I'm in Canada and I haven't had to pay, nor am I in debt for, one red cent for the amazing care I've gotten and continue to get. I do pay for the Letrozole I am now taking and will be taking for 5 years but thankfully, one of the benefits from my employer is to cover a (significant) percentage of my prescribed drugs. Otherwise, it's about  $100 a month. For 5 years. I could pay for it if I had to and no doubt my budget would feel it, but it's doable. I'm lucky.

After watching the documentary my heart was breaking for those who can't afford to treat their breast cancer, or any life threatening disease, early enough and have no insurance, benefits, or publicly funded health care system.

How does one experience this and also worry about money? There are already so many things to think of and try not to worry about, I can't imagine pulling this off if I also had to worry about paying for my care.

So there it is. You have the links. You know I'm doing breast cancer. If you want to talk about it, welcome.

I've had tons of support, support from family and friends who have and have not had breast cancer but not everyone is as fortunate as me. So, here I am. If you want to talk about mammograms, biopsies (fine needle or core), lumpectomies, sentinel node biopsies, lymphedema, radiation or any other breast cancer related topics on which I am no expert...I'm here if you need.

I had so many people to talk about it all with when I needed that the thought of someone having no one literally brings tears to my eyes.

Feel free to use this post to talk to me, to each other, or just to vent. I will still write a post here and there about this experience, there's one in particular I need to write, a post where I need to talk about my friend who died from cancer in the summer, an old friend that I drew tons of strength from through this insanity. The grace and dignity with which she conducted her battle against cancer left a huge impression on me and little did I know at the time I was learning such a valuable lesson.

Hmm. Life. Doing our best to love and appreciate it while we have it.

21 comments:

  1. You know I'm standing right there with you scratching my head and going, "How do you face a life-threatening illness and worry about money?" Had to do it with my kid when she was seven. I asked to see the bill when the four days in ICU were over and it was CEO-salary-worthy. It would have tanked us as a family. Guess that's what they mean by pro-family, chuckle, chuckle. Yup, I live in the same country as you.

    You stay well, my friend, and thanks for the links and the food for thought.

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  2. The magnitude of the expense and how it would affect a person emotionally just blew me away in the documentary. I've never thought to ask to "see the bill". Also, the late diagnosis directly related to expense is very sad.

    Since September I've had countless appointments which included pre-ops, an MRI and surgery on my knee (rushed because of the cancer), 2 biopsies, 2 surgeries on my breast (lumpectomy and sentinel node biopsy), CT scan, cardioechogram, separate procedures to prep for the surgeries performed at two different hospitals than where the surgery was being performed, and I've been mapped for radiation which I haven't started yet.

    I hadn't even thought of what it might cost me or how much of a pain dealing with an insurance company would be if I lived elsewhere, until I watched the documentary.

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  3. Wow. First of all, hat's off for this magnanimous gesture of support. Not to mention the grace with which you've weathered your own story. "You know I'm doing breast cancer." I love the way you phrased that. It creates a very specific mindset that's very difficult to find, but very important to anyone effected by long-term or chronic illness.

    As to how one deals with it while dealing with money? I suggest lots of crying. Until recently a common experience in the States when confronted by a diagnosis of cancer was being dropped by your insurance company immediately. Once treatment was necessary, it became unavailable. They can't legally do that anymore, at least not for now.

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  4. Holy crap I am, I hope hope hope for you all that it stays illegal for insurance companies to drop people once treatment is needed. That's disgusting!

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  5. Campbell, I'm so glad you shared your story. My new job is actually to help doctor's offices become "Medical homes," where patients with certain conditions such as cancer, diabetes, heart failure and pulmonary disease will get navigation. All thanks to Obamacare.

    I am generally a political conservative, but when it comes to healthcare I take the unpopular perspective of being in favor of healthcare reform.

    I am so glad you got into navigation and are receiving excellent care. You deserve no less. I am going to send a link to this post to my sister-in-law who is a breast cancer survivor. It was transformational experience for her.

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  6. Good for you Megan! It sounds like a great thing this navigation. Hopefully the Obamacare naysayers aren't the majority in your upcoming election.

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  7. Campbell, wishing you good health and complete recovery and thanks for posting this.

    Megan, Bless you for supporting health care reform! Several years ago my son who was living in Hawaii at the time, employed in a minimum wage job with no insurance, camping out and homeless, ( not as bad as that sounds in Hawaii) got a serious infection from a blister and ended up in hospital for a week. The bill was terrible, and took all his meager savings plus some help from us. He is now back living with us and studying for his RN.

    I know too many people who put off getting life-saving medical care because they have no or inadequate insurance. The health insurance industry in the USA is a monster that kills, rather than heals. I can't imagine facing a major health threat with no insurance and worry about money on top of that. Other countries take care of their people, it is shameful that the US does not.

    Campbell, my best friend from childhood beat breast cancer over 5 years ago, and she is now healthy and clear. Wishing the same for you and all cancer survivors.

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  8. 15 year survivor here with lumpectomy and radiation. Sounds like you were treated early and can pray for a sucsessful treatment.

    One of the things I became convinced of was that my lifetime of stuffing down my feelings and being the "good" girl may have contibuted to my decreased immune system and developing cancer. I read about studies where people who journaled and went to counseling and became more self care focused did better after cancer.

    So keep on writting and exploring your feelings and taking care of yourself.

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    1. Hi Lora, yes, I was very lucky to have been treated so early.

      Just started radiation today. The radiation itself was like nothing but wow, it was extremely emotional being amongst other cancer patients, some of whom are obviously having a far more difficult fight than I've had so far.

      Now, the hot yoga I tried today, whew, now THAT was ...hot. Yikes. I am trying to get back into exercising and thought I'd give the yoga a go. It's alright I think, and not easy!

      Thanks so much for commenting and you too take care of yourself : )

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  9. Hi Campbell,

    I'm sorry to hear about the breast cancer and am in awe of your positive attitude in face of the new challenges that lie ahead. I just wanted you to know that I'm thinking of you and hoping that all goes well.

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  10. Thanks Gail but don't be in awe. I've had my moments to be sure. I like to think of myself as realistically optimistic. When I was first being diagnosed I learned the hard way that I could be in the 25% or whatever the stat is that will actually have breast cancer after a sketchy mammogram. After that, I was, and am, as prepared as I can be for anything.

    Shit happens.

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  11. Campbell--wishing you good health! My mom is a breast cancer survivor of about two years; another tough woman just as I perceive you to be. Take care!

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    1. Thank you Soo, yay for your mom and hugs to you. Cancer is tough on our kids, our families.

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  12. Just wanted you to know I am thinking of you.
    cherylp

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  13. I am very sorry to hear that you are going through this. And I hope that you will make a full and speedy recovery. I am just grateful that you do not have to deal with the potentially devastating financial implications that you would if you lived in the U.S.

    Here is a common American scenario:
    An individual has health insurance through her employer and gets sick. If she is unable to work she will apply for disability. If denied (which is very common no matter how sick you are) she will most likely lose her job and will be offered COBRA health insurance benefits. COBRA is a continuation of her group insurance but at an exorbitant cost and is only available for 18 months. The appalling state of health care finance in this country is the reason that medical debt is the #1 cause of bankruptcy and homelessness. According to a Harvard University study, 45,000 per year (or 123 a day) die in the U.S. because of being uninsured or underinsured.

    If you are interested in learning more, Good Morning America did a few shows on people being denied disability, Oprah did a show called "Sick in America, It could happen to you", or watch Michael Moore's "Sicko" or read WendellPotter.com.

    @Megan,
    I am glad to learn that you are on the health care reform side of this debate.

    Campbell, I am wishing you the best and so glad that being Canadian you don't have to deal with this.

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  14. Thanks for the thoughts cheylp and well wishes Robin.

    I am extremely grateful to be a citizen of a country that has a healthcare program. I wish it for the whole world.

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  15. Sending you healing vibes and well wishes. Yet another reason I too am grateful to be Canadian. Take care of yourself.

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  16. Robin, thanks for the link to Wendell Potter--had not seen that before. Especially noteworthy since he used to work for Cigna and knows the health insurance game inside out. I especially enjoyed the appearance with Michael Moore, where he apologized again to Moore for descrediting Sicko, something he was forced to do as Cigna's PR guy. People should really wake up about the plethora of "op-eds" there are going to see in the run-up to the election trashing "Obamacare". These editorials are paid for by lobbyists for the health care insurance industry and that many of the attributed sources are fake. There was a Canadian who played into one of their sick little charades last time around--claimed she was going to have to wait months for critical surgery in Canada--and she was later revealed not to have a terminal illness at all.

    Potter also has a good post on the Vermont initiative, calling it parallel to what happened with Canada's Tommy Douglas and Saskatchewan--that once that system was in place the rest of Canada followed suit. Something to keep an eye on.

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  17. I hope you are right, Anon-0-care that one state could lead the nation into single-payer universal health care but I don't see it happening any time soon.

    The website http://www.emilionaresfoundation.org is for families with a child who has cancer. They request donations for families who are facing eviction and foreclosure. I cannot fathom how our country can allow people who are dealing with the unbelievable tragedy of having a critically ill child to also have to worry that they may lose their housing. Also, Donna Smith who was featured in Sicko has an important blog about the issue.

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