Six Weeks to Live

March 16, 2017

Post by Guest Writer, Angelia Huntley

Angelia Huntley received a Journalism Degree from the University of Nebraska – Lincoln. She’s been published in The Daily Nebraskan newspaper and has written short stories. She is currently working on a full length fictional novel. When not cheering on her Chicago Cubs, playing with her dogs (Roxie and Snickers), or as she says on her Facebook page “trying to save the world one recyclable at a time,” she is traveling the country exploring new restaurants with her spousal equivalent, Gene.

For almost three years Brenda Clifford’s dad, Fred Clifford, had gone to his doctor with complaints about the glands in his neck being swollen. The doctors continued to tell him and his family that nothing was wrong. Brenda said they kept telling us, “It’s just ingrown whiskers, don’t worry about it.”

Yet, after three years they knew something was not right. In 1991, the family decided to get a second opinion. Keep reading

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Trumpcare vs Obamacare? Just CARE

March 1, 2017

I posted this article from Cure magazine on whaddaconcept’s Facebook page, but I think it’s important enough that it should be posted here as well. I am not trying to take sides, but I am trying to explain how crucial it is for EVERYONE to get health care … not access to health care, but actual health care. All access means is that it is available. Even if it’s available, it’s worthless if it’s too expensive to buy.

I shake my head every time I hear someone say, or see someone write, that they shouldn’t have to pay for someone else’s health care. Listen clearly, YOU ARE NOT PAYING FOR SOMEONE ELSE’S HEALTH CARE. Just like any other insurance, you are, basically, paying to insure you are okay if something happens. You may be healthy now, so you ask yourself, “Why should I have to get health insurance?” I was healthy — never been admitted to the hospital, never broke a bone, no chronic issues, no medications, relatively young — until I was in my mid to late 40’s. Keep reading

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A Few Hard Truths

February 6, 2017

This is a hard post to write for a number of reasons….

1. When I started this blog, I promised myself that I would not insert politics into it. I just felt that it was necessary to focus on healthcare issues, survival, quality of life. I now realize that expecting to discuss healthcare without addressing politics is a little like expecting to take care of a baby without cleaning up poop. Political motivations and decisions impact all aspects of healthcare.

2. While I’ve always tried to be 100% honest about what’s happening to me during this journey, for the most part, I’ve not put things into dollars and cents.  I grew up in the Midwest … discussing finances publicly isn’t something we do. In this instance, breaking down my financial reality, as uncomfortable as that is, is important.

3. The impetus for this post is a result of my concern over the abhorrent behavior of people that I loved, respected, and thought I knew. Keep reading

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Death Doesn’t Care About Your Asterisks

January 18, 2017

Guest post by Justin Harter.

You know that feeling when you have a single loose hair that just flutters around wistfully in the wind? The sort of strand that’s just clumped together enough to bend gently under the air vent and tickle your scalp? I felt that all day yesterday. Except I just got my haircut and there wasn’t anything out of place. Just a single spot on my head that felt tingly all day.

For most people that would be the sort of thing you find curiously annoying and move on from. But coupled with a headache from this past weekend I can’t help but think one thing: this is it. I have a brain tumor. I’ll be dead soon.

My other irrational party trick: noting that mother died 15 years ago today from a brain tumor. She was 36 when she was diagnosed and 38 when she died.

I turn 30 in April and naturally I assume I have about six years to live. Keep reading

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Happy Holidays!

December 25, 2016

Image result for Today I Choose JoyI’ve always been a sentimental person, but as I get older and struggle more and more with my health, traditions have become something of an obsession. This time of year takes me back to my childhood. The last day of school before break, snowball fights with friends, smells of mom’s baking, decorations, opening presents, Christmas Eve service and even the occasional hockey game with some tipsy relatives.

I remember my mother preparing holiday dinner for family and friends, including, if I’m completely honest, a few people she could barely tolerate. No matter what, all were welcome and all were treated with respect. When you came to her home, you were included, you were made comfortable, and you were fed … whether you were liked or not.

My mother was and is an atheist.  The holidays were more about family, tradition, and being together than they were about religious affiliation or celebration. Keep reading

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Protocol is Great … Until it’s Not

July 14, 2016

For the purpose of this post, I define “protocol” as a plan or procedure for diagnosis and medical treatment.

I’ll admit, after four years, I am losing patience with those in the medical community who try to fit us all into a single box. Particularly when they stop using protocol as a baseline for diagnosis or treatment and it degrades into dogmatic ideology. Don’t get me wrong, protocol is great and has been proven effective (or it wouldn’t be protocol). Most of the time, it serves the patient, and the medical professional, well. However, if a treatment doesn’t work or the issue isn’t resolved, IT IS TIME TO TRY SOMETHING DIFFERENT. Sometimes, when you hear hoofbeats, it may really be zebras rather than horses.

Today, I read an article that immediately PISSED ME OFF because it shows how much we are lumped together without recognizing that there will be exceptions to the rules and, therefore, a need, when necessary, to think outside the box. Keep reading

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She has Incurable Cancer

June 9, 2016

Sorry for the delay in writing, but I’ve been experiencing some health issues that, ironically enough, are not related to cancer…psoriatic arthritis. I’m feeling better, getting it under control, and hoping to start adding new posts very soon.  In the meantime, I ran across an incredible article that I would love to share.

This is a wonderful interview to help explain how someone can be considered “terminal,” but still look great, who can survive for years … yet, they’ve changed physically, emotionally, psychologically. They aren’t the same person, but they inhibit the same, albeit modified, body. I’m not sure I’ve read a better explanation of how that happens … until now.

http://www.huffingtonpost.com/entry/she-has-incurable-cancer-and-heres-what-she-has-to_us_57578ef6e4b007e5ed66d471

  Keep reading

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Advice for Dealing with Financial Burden … Cure Today Magazine

January 24, 2016

When I was first diagnosed, I thought “Thank God, I have insurance!” This was the first time after years of being a consultant with very spotty insurance coverage that I had solid health insurance. In many ways, I was fortunate … I don’t know what I would have done without it because it opened many doors for me very quickly. However, what I didn’t realize was that I had several thousands of dollars in deductibles and out-of-pocket costs annually (and, believe me, my employer was paying a sizable amount each month for that insurance). I also had a $25.00 co-pay. Again, what I didn’t realize was that the co-pay was for a doctor’s visit only. Imagine my surprise when I got a call from my oncologist’s billing department, just days from my first chemo treatment, informing me that my co-pay was well over $300.00 per treatment AND it was due at the time of treatment! Keep reading

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