A ‘new normal’?

Cancer Word Map

Prior to being diagnosed with metastatic breast cancer I took one pill a day for a history of bipolar disease. Thanks to that one little pill I have been able to live a ‘normal’ life free of the intense highs and lows BPD can bring.

The reality is I have been incredibly lucky. Despite an extensive family history of heart disease, high blood pressure, high cholesterol and diabetes, I have beaten the odds. While I have always been a bigger fluffy gal, I have always amazed my physicians. My blood pressure is almost always in the normal range, my blood sugars often more on the low side (how that happens with my diet of Dr. Pepper and Starbucks Frappuccinos I’ll never know!) and my cholesterol numbers are always well within range. My bloodwork always almost perfect.

Being sick has always been foreign to me. I averaged one doctors visit every year or two. While there are some women that deal with urinary tract infections as often as other people get a runny nose, I have had only one in my life. Even though I smoked cigarettes I never had any issues with bronchitis or pneumonia. The worst things I had ever dealt with was a bout of the stomach flu or a nasty cold from time to time. I simply just never had the time to be sick.

That all changed when I was diagnosed with cancer. The yearly/biyearly doctors visits became monthly. The one medication quickly turned into thirteen plus a monthly injection. And I guess this is what they mean by my ‘new normal.’

Pills to combat my cancer. Pills to treat the nausea the cancer medications give me. Vitamins to help strengthen the bones that cancer ate away at. God willing I will be able to manage my cancer through oral medication for years to come. This is what we call a ‘new normal.’ Better living through chemistry, right?

I am one of the lucky ones. These thirteen medications I take each day are successfully beating my cancer into submission (but not remission). The medications have significantly reduced the pain that had debilitated me and made it almost impossible to do something as simple as go to the bathroom.

For so many others, metastatic breast cancer involves mastectomies, ports, chemotherapy and radiation. For them it involves uncontrollable pain, nausea that won’t fade and a diminished overall quality of life. And for these fighters it involves end-of-life decisions at all ages. It doesn’t care whether you are twenty or ninety. No matter the age, no one is safe from this relentless killer disease.

I have mixed feelings about advertisements I have seen for these two metastatic breast cancer medications. It is funny. These ads are not new, however until I was diagnosed they were merely background noise as any other commercials are for me. I was too busy wandering into the kitchen to grab a bowl of chips or a glass of soda. I was too busy sending texts or checking Facebook. Now I seem to see them no matter where I turn.

Cancer in textbook

Whether it is Pfizer’s Ibrance promoting living a ‘new normal’ with metastatic breast cancer or Eli Lilly’s Verzenio helping relentless women fight a relentless disease, both sugarcoat what the disease can become. These advertisements portray it as peppy women living an active life. It shows them going about their everyday life as though nothing were different.

These advertisements ignore what metastatic breast cancer can become. It ignores the anxious visits to a chemotherapy suites or the uncontrollable nausea it can cause. It glosses over radiation, incredible pain, and ultimately death. These ads further perpetuate the ‘pink washing’ that gives the impression that all breast cancer can be beaten, that in the end we can join the ranks of the survivors.

Ibrance new patient kitI am immensely grateful for the combination of Ibrance and letrozole. I have been incredibly blessed that so far my cancer has responded very well to them. The tumor in my left breast has shrunk to where it is difficult to locate it and my tumor markers have improved dramatically. My ‘new normal’ isn’t that much different than my ‘old normal.’ Once I am cleared to return to work my life won’t be that much different than it was before September 25, 2018.

Even for the lucky ones such as myself, these commercials ignore one other unseen part of the ‘new normal’ life with metastatic breast cancer. Each and every day we wake up and pray today isn’t the day these ‘wonder’ drugs stop working. We pray that they continue to prevent tumor growth. We pray that our ‘new normal’ lasts for many years rather than just days or months.

Warm and fuzzy advertising campaigns can’t change the cold, cruel reality. Metastatic breast cancer is a fight that will never end until a cure is found.

Note: This the first video is an advertisement for Pfizer’s Ibrance (the medication I am currently prescribed) and the second video is for Eli Lilly’s Verzenio, the photo is of the Ibrance new patient starter kit.

Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)

 

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I am not a statistic

my picture

It’s kind of funny. Through everything, my doctor has never once said the words ‘metastatic breast cancer’ or ‘stage IV breast cancer.’ When I asked him what my prognosis was, he told me that he has had patients live ten or fifteen years after being diagnosed with same type of cancer as me. But he has never once said those words. Even now four months in, he still hasn’t.

Maybe he was trying to keep me from losing hope. Maybe he was afraid that if I knew just how much the odds were stacked up against me I might give up and stop fighting. Or maybe he simply assumed that as a nurse I could figure it out for myself.

The problem is I research everything. From the time that my family doctor told me she thought I had multiple myeloma to when it was determined that the cancer originated in my breast, I researched everything there was to read. Very quickly I realized what I had. Very quickly I realized it was metastatic breast cancer. And the more I read, the more afraid I became.

Only six percent of breast cancer is first diagnosed after metastasizing to a distant site (called de novo metastatic breast cancer). The average survival is only two and a half years and only twenty two percent of people diagnosed with metastatic breast cancer live five years or more.

5YearSurvivalRate.jpg

I’m only 43 years old. Two and a half years would mean I would only be 45 years old when I died. My son might not even finish college before I died. My granddaughters wouldn’t even be in elementary school. I was becoming more and more terrified with each research study I read. I’m too young to die. I still have so much more life left to live.

In those early days when I was so scared a friend told me something that has stuck with me. When I told my friend the statistics, when I said god what if I only have two years left to live, the response was, ‘You aren’t just a number.’

It’s hard to stay strong in the face of such incredible odds. It’s so hard to push the fear out of your head but mental outlook plays such an important role in battling any disease, especially cancer. Everyday I wake up and tell myself, ‘you can do this.’ I am making plans for my future rather than allowing myself to think that I don’t have a future left to plan for.

It wasn’t always easy to stay positive. The first month after I was first diagnosed the pain was so intense I couldn’t even get out of bed. I couldn’t take care of myself. I had nausea and couldn’t eat so I lost almost thirty pounds in less than two months. I began to wonder if life was going to be like this, was it even worth living? I started to fall dark hole. Those first days and weeks were the hardest days of my life.

courage

Then one day I forced myself to smile. I forced myself to get out of bed. I remember the first day I got up and walked around the house pushing a walker and I felt like I had just won a marathon. I was so proud of myself. That was the point where my life changed.

I began to push the thoughts of doubt and fear out of my mind. I’m not just a number. I’m not just a statistic. I’m a person. I’m a fighter. I’m me. When I tell my sister I am afraid she tells me that ‘we Lathens are stubborn bitches.’ She is right. We are strong and we are fighters. (Even though sometimes the things we fight for are stupid and a little crazy!)

Everyday it became a little easier to believe in myself and it became a little easier to look to the future. Day by day as I became stronger the dark thoughts slowly lost their hold on me. I moved from fear to triumph every time I went to my oncologist’s office and watched my tumor markers go lower and lower. Slowly as time passed the terrible pain started to fade and I began to live again. To really live.Find the strength

In the beginning my voice of strength was merely a whisper so soft I could barely hear it but one day it yelled at me as loud as it could, ‘You’ve got this!’ Every morning when I wake up I remind myself I can do this. It’s always darkest before the dawn. Some days I look back on the old me and miss her but there are other days I look at the me I’ve become and realize cancer has awakened a warrior in me I never knew existed. Until I was diagnosed with cancer I was afraid of everything. Cancer has taught me life is too short to live in fear.

Find the strength in yourself. Life is beautiful and failure isn’t an option.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)

Sometimes you just need to laugh

Never give up

Before September 25, 2018 I was a mother, a wife, a full-time student, and a nurse. That all changed with three words. Three words that changed my life forever. “You have cancer.”

The look on my doctor’s face said it all. She even had tears in her eyes as she broke the news. Like hurt her to tell me. She sat down next to the ER cart I was on and said a prayer with me as I sat there in stunned silence.

The next few weeks were probably the darkest days of my life. We didn’t initially know what kind of cancer I had so I had many tests. CT scans, mammograms, a breast biopsy, a bone and bone marrow biopsy. Once we knew I was battling stage IV breast cancer, a whole new set of unknowns and fears set in. Stage IV cancer. That means terminal. No cure. No hope of remission.

In addition to my diagnosis, I also was in excruciating pain constantly. Something as simple as rolling over in bed hurt so badly. I couldn’t even walk to the bathroom without assistance. My middle daughter Morgan (who is a nurse’s aide) even had to help me to a bedside commode and wipe my hiney. I was scared, hurting, and now embarrassed. 43 years old and unable to even wipe myself.

I couldn’t leave my bedroom and I began to drown in the depression. It was like a dark hole I couldn’t climb out of. I couldn’t work. I couldn’t care for myself. And I could die. 43 years old, and I could die. I could leave my family behind. Thank goodness they were there for me. Thank god for the friends who helped pull me out of the dark pit that was swallowing me up.

There wasn’t a lot to laugh about during those first uncertain days. I wasn’t able to do much besides watch TV, play games on my phone, and surf the internet. I caught up on movies I hadn’t seen before. Who doesn’t laugh when Deadpool says,

You’re probably thinking, “My boyfriend said this was a superhero movie, but that guy in the red suit just turned that other guy into a fucking kebab!” Well, I may be super, but I am no hero. And yeah, technically this is a murder, but some of the best love stories start with a murder. And that’s exactly what this is: a love story.

And how can you resist smiling when you see the LEGO Movie make fun of Starbucks overpriced coffee (that I am terribly addicted to)?

And you would have to have no sense of humor at all if you didn’t laugh when Brandon Farris talked about almost cooking the cleaning lady on the top of the pizza oven.

Slowly I found my way through the darkness. It didn’t happen overnight but as time passed, slowly I found a new fire. I realized that if I gave up, that would be it. My life would be over so I might as well pack it in and start funeral planning. I could give up, or I could dig my heels in and fight for each and every last breath.

I have too much left to do on this earth, and I refuse to let cancer take that from me. My life might end sooner than I planned, but I intend to make the best of every minute I have left. I intend to do the things I always planned to but never got around to. And I intend to smile brighter, laugh harder, and love deeper. Cancer can’t take that from me unless I let it, and I’m determined not to let that happen.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)