What It Means to Be Your Own Patient Advocate
I learned what it means to be a patient advocate many years ago, when my dad was sick. We knew something was terribly wrong with this tall, strapping man when he started to lose weight and was continually fatigued. Our frustration grew as each time he went to the doctor, he came home with instructions to quit smoking.
Fighting for My Father
Patient advocacy often means working around the doctor, so I found a clinic in Toronto that would perform every test known to man to determine my dad’s illness. Thanks to the Canadian healthcare system, it wasn’t going to cost my dad anything. We quickly learned that he had non-Ho...
Source: Life with Breast Cancer - January 23, 2017 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
How I Celebrate the New Year With Metastatic Breast Cancer
New Year’s Day 2017 found me in Panama City, Florida. The New Year was rung in by fireworks literally right outside my beach-front window. My husband and I had planned this last-minute trip on Christmas Day, and when we couldn’t get flights, we jumped in the car the next day and headed south from Michigan to Florida.
Love them or hate them, New Year’s celebrations come every year. In the past, I sometimes enjoyed the night or, like many people, often found it a letdown: All of the excitement leading up to one moment, only to wake up the next day in the exact same circumstances you were in the year before.
How Cancer ...
Source: Life with Breast Cancer - January 11, 2017 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Breast Cancer and My Unique Security Problem
I travel across the border between Canada and Michigan almost once a month to visit my family in Ontario. Thanks to breast cancer, I have an interesting problem — I have three pieces of ID that I use, each with a picture of me sporting a different hairdo and hair color. In this age of increased scrutiny and tighter border security, having this distinction is not a good thing. Several times I have had border officers look at my passport, then my permanent resident card (“green card”), and after noticing that I am blonde in one and brunette in another, ask for a third piece of ID. It doesn’t help that I then ...
Source: Life with Breast Cancer - January 6, 2017 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
With Stage 4 Breast Cancer, ‘ Pinktober ’ Awareness Just Isn ’ t Enough
The worst thing about living with metastatic breast cancer during Pinktober is seeing most of the attention placed on disease awareness and prevention.
We who have been diagnosed with stage 4 breast cancer are given little hope beyond continued treatment, and we’re slowly losing faith that a cure is coming.
So I am so encouraged by organizations like the Metastatic Breast Cancer Alliance (MBC Alliance) that are dedicated to helping people with this terminal disease. This organization, whose members are dedicated to giving hope and making life better for us, brings together nonprofits, patients, advocates, and ph...
Source: Life with Breast Cancer - October 26, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
With Stage 4 Breast Cancer, ‘Pinktober’ Awareness Just Isn’t Enough
The worst thing about living with metastatic breast cancer during Pinktober is seeing most of the attention placed on disease awareness and prevention.
We who have been diagnosed with stage 4 breast cancer are given little hope beyond continued treatment, and we’re slowly losing faith that a cure is coming.
So I am so encouraged by organizations like the Metastatic Breast Cancer Alliance (MBC Alliance) that are dedicated to helping people with this terminal disease. This organization, whose members are dedicated to giving hope and making life better for us, brings together non-profits, patients, advocates, and p...
Source: Life with Breast Cancer - October 26, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
What ‘Taking Care of Yourself’ Means When You Have Metastatic Breast Cancer
People who call to check on me often end the conversation by saying, “Take care of yourself.” I have said this to others battling their own conditions. Lately, though, I’ve been questioning what the expression even means.
Putting Myself First
Immediately after being diagnosed with metastatic breast cancer that had spread to my lungs, I spent almost a month in the hospital with a tube in my chest. When I got home, taking care of myself was a real priority.
No one asked anything of me, and friends and family rallied together to focus on my getting better. I didn’t question my need for self-care. I rested when I neede...
Source: Life with Breast Cancer - August 11, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Why I ’ m Trying to Find Spouses for My Sons
These past two months have been a whirlwind of wonderful celebrations. In June, we celebrated my eldest son’s graduation from college, and I held a surprise birthday party for my husband. This month, we’ve been involved in a wedding and preparing for another wedding in August.
Last week’s wedding was for a dear young man whom I consider a son, Adam, who married Maja. He and his twin brother, Chris, lost their mother to cancer when they were 10 years old. I had the privilege of knowing her and taking those boys under my wing during that time.
My youngest son was the best man, and the wedding couldn’t ha...
Source: Life with Breast Cancer - July 28, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Why I ’m Trying to Find Spouses for My Sons
These past two months have been a whirlwind of wonderful celebrations. In June, we celebrated my eldest son’s graduation from college, and I held a surprise birthday party for my husband. This month, we’ve been involved in a wedding and preparing for another wedding in August.
Last week’s wedding was for a dear young man whom I consider a son, Adam, who married Maja. He and his twin brother, Chris, lost their mother to cancer when they were 10 years old. I had the privilege of knowing her and taking those boys under my wing during that time.
My youngest son was the best man, and the wedding couldn’t ha...
Source: Life with Breast Cancer - July 28, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
More Bad News?! How to Stay Calm With Metastatic Breast Cancer
I’ve received a lot of bad news since being diagnosed with metastatic breast cancer almost three years ago. Mostly it comes after scans that show the cancer has progressed, and the treatment has stopped working.
It’s a repeating pattern: Things go well for a while — the treatment works and there’s no progression — and then the cancer fights back.
I have learned that living with stage 4 breast cancer means that bad news is inevitable.
It happened again last week when the dreaded MRI showed cancer spread throughout my spine. Unfortunately, we didn’t have a previous MRI to compare it to, even though PET and CT sca...
Source: Life with Breast Cancer - July 15, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Cancer Is Scary, but It ’s the MRI Machine That Terrifies Me
I mentioned in last’s week blog that I don’t scare easily. Well, that might not be completely true. I have two real fears — and they are major!
For one thing, I am totally afraid of falling off a cruise ship. I am convinced that someone falls off a ship on every cruise. I can’t imagine anything more terrifying than finding yourself in the middle of the ocean, with the big boat you were on moving off into the horizon without you.
I know that sounds random and irrational, but there you have it.
My Biggest Fear
My other fear is perhaps more relatable, especially for other women who may be living with metastatic breas...
Source: Life with Breast Cancer - July 8, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Cancer Is Scary, but It’s the MRI Machine That Terrifies Me
I mentioned in last’s week blog that I don’t scare easily. Well, that might not be completely true. I have two real fears — and they are major!
For one thing, I am totally afraid of falling off a cruise ship. I am convinced that someone falls off a ship on every cruise. I can’t imagine anything more terrifying than finding yourself in the middle of the ocean, with the big boat you were on moving off into the horizon without you.
I know that sounds random and irrational, but there you have it.
My Biggest Fear
My other fear is perhaps more relatable, especially for other women who may be living with metastatic breas...
Source: Life with Breast Cancer - July 8, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Emotional Distress: It ’s Inevitable When You Have Metastatic Breast Cancer
This has been a tough couple of months. I’m finding it a challenge to figure out how to have purpose and direction while living with an incurable disease.
In fact, the biggest problem has been how to plan for the rest of my life when there might not be a “rest of my life.”
For the most part, the cancer is under control. I have been fortunate to be asymptomatic, with only a few bouts of intolerable pain to deal with. The source of that pain was recently discovered on a CT scan, when the report showed that a fractured rib was healing. Until the doctor read that to me, I had no idea that I had fractured a rib.
So be...
Source: Life with Breast Cancer - June 29, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Emotional Distress: It’s Inevitable When You Have Metastatic Breast Cancer
This has been a tough couple of months. I’m finding it a challenge to figure out how to have purpose and direction while living with an incurable disease.
In fact, the biggest problem has been how to plan for the rest of my life when there might not be a “rest of my life.”
For the most part, the cancer is under control. I have been fortunate to be asymptomatic, with only a few bouts of intolerable pain to deal with. The source of that pain was recently discovered on a CT scan, when the report showed that a fractured rib was healing. Until the doctor read that to me, I had no idea that I had fractured a rib.
So be...
Source: Life with Breast Cancer - June 29, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Do I Dare Connect With Others Living With Metastatic Breast Cancer?
Last month, I had the opportunity to attend the HealtheVoices16 conference in Chicago. I attended last year’s conference as well, in New Jersey, and I have to say that both times, I was overwhelmed by how well I was treated and by the quality of the speakers and workshops.
This conference is probably the only one like it that brings together patient advocates and bloggers who are using social media to connect with other patients. The aim of the conference is to inform and empower us to keep using our voices.
Deeply Rooted Connections
The theme of this year’s conference was Deeply Rooted Connections. I know that social ...
Source: Life with Breast Cancer - May 9, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Source Type: blogs
Don ’t Believe These 3 Myths About Living With Cancer
When people find out that I have stage 4 terminal breast cancer, they have varied reactions. Some are saddened and compassionate, some are concerned and curious, and others, because of their own fears, need to find an explanation — a way to feel in control.
This often leads to myths about living with cancer that can be insulting to those of us who are battling the disease.
Let’s examine the truth behind three of these myths:
Myth #1: If you are a positive person with a great attitude, you won’t get cancer.
My father, mother, and niece all battled cancer. My parents were anything but people who gave in or gave up. Th...
Source: Life with Breast Cancer - March 8, 2016 Category: Cancer & Oncology Authors: Kathy-Ellen Kups, RN Tags: Breast Cancer Nutrition Risk Factors treatment Source Type: blogs
